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Wednesday, February 28, 2007

What a day!

Just a quickie to say thank you to everybody who sent Lewis such wonderful birthday cards, letters, and gifts, and to everybody who was able to come to his birthday party this afternoon. I will be posting some pics from the party, as well as proper thank yous, but we are absolutely tired out now so it wont be until tomorrow or Friday (or maybe Saturday or Sunday!!). Lewis had the most amazing day, thank you everybody for helping us to celebrate his 3rd birthday - which 2 months ago we really didnt think he would even reach. More later on the details of his day! xxxx PS Cheryl can you get Tony to text James your email and your postal address? Thank you!

HAPPY BIRTHDAY LEWIS!!!!! 3 Today!

This time three years ago, eh!
Lewis was due on 14th February (awwww!) and so (using your mathmetician brains!) you will see that he was, today 3 years ago, 2 weeks overdue! We were due to go in the following day to start the inducing procedure (yeuch!).

It was a pretty normal day for us! I was hugely enormous (put on 5 stone through massive over eating!!! chip butties here we come!) and so James and Samuel walked and I waddled into town for a wander round the shops.

We came home around midday, James went somewhere (cant remember where! B&Q or something!) and while he was gone I had a small bleed. James arrived back just as I was starting to panic! He had arrived back just in time to then go out and play badminton with Richard! So I rang the hospital and they said they'd send an ambulance, and so I told James - you'll have to ring Richard and cancel badminton!

The ambulance arrived and Richard and Teresa had Samuel for us while we were whisked off to Sheffield with the lights and sirens flashing! By this time, I had actually started having contractions, 5 minutes apart, and the ambulance man was beginning to think we'd have the baby on the M1!!!!

At the hospital, the contractions slowed down and I was only 2cm dilated so we settled in for a long evening! But it being 28th Feb on a leap year, I didnt want Lew coming out late so I was determined he'd be out before midnight!

Around 6pm the contractions came full on again and I discovered the massive benefits of gas and air (so much more effective when you actually know how to use the machine!). By 8.30am (I can remember seeing the clock in a gas and air haze!) the pain was too intense for me and I was also definitely wanting to push push push but they checked and said no, only 6cm - cant push ... arrggghhhhhh! I then decided I HAD to have some more pain relief so they arranged for some diamorphine. Then ... that awful embarrassing thing happened ... I needed the toilet!!!

This made the midwife check me again and YAY 10 cm and I could push and within minutes, Lewis was born and it was totally awesome!! I cant remember the exact time (terrible mother!) but it was around 9.20pm. Hellooooo Lewis! Samuel and Marion were outside waiting so they came in to meet the new brother/grandson. It was all very emotional and totally awesome!

So that was (for us) this day 3 years ago!

Tuesday, February 27, 2007

Massage

Lewis absolutely loves his baby massage and his traditional chinese massage (accupressure and reflexology). Well he doesnt love the accupressure so much because its stimulating parts of him that sometimes are a bit sore (which shows he needs it) but he feels better afterwards! And I love massage too!!! Recently we went to an event at The Dome and I had the most awesome Indian head massage - totally amazing! And through making a friend at the hospital (one of Lew's specialists), I was introduced to another friend who is training to be a professional masseur and is clocking up his hours for his training!! Of course having a friend who gives very reasonably priced massages (!!) makes one very popular and Ian has been kept very busy!! So now I am having to try and squeeze in a slot for me!!! Back to our daily life! Lewis has had a couple of very good nights sleep (hence have I!) and (like me!) the 'overdose' of sleep has made him a bit grouchy! Mad isnt it! We get ratty because we are tired, and then we get grumpy because we've had too much sleep!!! So yesterday I actually had to wake him up to get ready to go to playgroup at the hospital (and yes I CRINGE everytime I remember that I said Doncarrrrster hospital on the TV!). We got ready in super quick time, loaded up the car and drove to the hospital and HOORAY there were lots of parking spaces! We went inside, and Lewis met his very good friends, the hospital volunteers who sit at the desk just inside the gate 4 entrance. I have to tell you, they are so welcoming and happy and kind and cheerful - its great! And ... I was told yesterday that one of the volunteers (I havent met her yet) has been volunteering for 30+ years and is now in her 80s! And how humble is this? They are being taken out on Friday by the hospital Trust for lunch to say thank you for their volunteering and they said 'why do we need thanking? we do this because we enjoy it' - they do deserve thanking because they are wonderful! Anyway, we had a chat with them, and they had seen Lew on TV which was great and of course Lewis adores them so they always get lots and lots of smiles from him and some eyelash batting! And one of the ladies had got him a little cuddly yellow duck - thank you so much!! But we left it at group yesterday so must remember to collect it today! Well, one of the ladies has relatives who live in London and she said that when she heard me say 'Doncaarrrrrrster' (cringe!) on the TV, she knew I wasnt from up here! So, turns out her relatives live in Hampton which is where I used to live!!!! How freaky is that! So we had a nice chat about the area, and of course my sister Nicola who is visiting with Evie still lives down that way so it was a very interesting conversation! We met Marie, and Lew was pleased to see her as well, and she was looking very slim and trendy! We went round to group and Evie started to play but Lew was not happy and got upset (too much sleep you see!). Anyway, he calmed down after a little while, and Nicola and I went up to visit Jin Qui who is still in Ward 31 with Sahn (been a week now). Sahn is looking much much better, but Jane was also there as she had a high temperature, but she was still the same Jane - chatty and bubbly and smiley, and absolutely gorgeous! Poor Jill from group had to come and find us though - not because of Lewis (!) but because Evie had realised mummy wasnt there and was very upset! So Evie enjoyed playing with Jane while Nicola and I chatted to Jin Qui. Jin Qui has found a clinic in China that has a very high success rate for children with damaged brains, and is very keen to take Sahn, but her brother (who is a doctor in China) has said that Sahn is too young for the journey. Its a very difficult time for Jin Qui because she cannot bear to see Sahn as she is now, knowing that there is nothing she can do. I know how she feels - if we dont have any luck at Great Ormond Street on 30th April, then we will have to start looking overseas - we have had plenty of suggestions from US (Kentucky - from Tracie), China (Beijing - from Chinese Church Daniel and his wife), Russia/Ukraine (from Olga) and also Cyprus (again Olga). It seems there are so many superb hospitals and clinics for children with neurological conditions or injuries, all over the world, but at the moment we are putting our faith in GOSH and Professor Surtees. At around 11.45am we all went back down to group (Jin Qui, Sahn and Jane came too) and Lewis had been playing with sand - he had the sahara in his chair lol! Rachel and Jill had a lovely surprise for Lewis and the other children (Daniel and Eden) and had got a little chocolate cake and put 3 candles in it! Everybody sang Happy Birthday to Lew and Rachel helped him blow out the candles. Sadly Lew couldnt have any cake, but we gave him a taste by rubbing a bit of the chocolate on his lips (which dribbled out). It was wonderful for Lewis to have this. Rachel and Jill really are the best - it is 100% clear they adore the children they work with. We drove home again and Lesley, Kevin and Tobey had arrived for a cuppa. Evie went up for her nap while we had a chat and Lewis enjoyed seeing Tobey. Unfortunately (!) Evie decided she didnt want a nap under any circumstances so Nicola brought her back down again! So Evie and Tobey had a great time entertaining Lewis!!! Jodie popped in as well - she was off school because she has damaged her ear drum and so couldnt hear, and I had to take her back home again for 3.30pm as she had a doctors appointment - Jodie remember - no cotton buds in your ears!!! Lesley and Kevin and Tobey had to leave as well at 3pm as they had to be home to get Callum from school, so Nicola stayed home with Evie and Lewis while I dropped off Jodie and then popped to Asda for stuff for tea! Lew was soooo tired when I got back, I sat him on my lap and he had a little nap which unfortunately turned into a seizure but it lasted only 4 minutes so I logged it on his sheet and after it had finished he was fine. When James came home, he gave Lew a bath and Evie helped!!! Then it was time for bed for both of them as they had both had a very busy day! Thank you to those people who telephoned into Calendar after the report on Friday about Lewis' condition. Shirelle - Lewis does not have battens disease (been tested for this late last year), but it was definitely on the cards for a while and was a very very difficult time for us and for anyone who has lost a child to battens disease, my heart goes out to you, I can only imagine (as I have many times imagined) how this loss has affected you. It was also suggested that Lewis may have pyridoxine independent epilepsy - Mrs Russell we will mention this to our neurologist, thank you for the suggestion.

Sunday, February 25, 2007

Busy busy busy!

So are we famous yet?!! Well we were in Holland & Barrett on Saturday in York and a lady came over and said to Lewis 'I saw you on the television last night!' so yes we are famous lol! Friday was very interesting! We went to hospital in the morning to see Jin Qui and Sahn and Sahn was looking alot better although she wasnt ready to come out yet. Lewis was very excited to see all his friends on Ward 31, he has his own little fan club going now I think! Then we bumped into Roz and Emma - Emma had to have an x ray on her teeth as her jaw was sore. All seems to be okay, possibly wisdom teeth coming through! Then we went downstairs to see Janette, Physio. That is where the fun started!!! As I have already mentioned, Lewis has had some antiobiotic nappies! Well he did one while Janette was holding him so we went into the baby changing room and as I pulled Lew's trousers off ... well lets say that Janette's trousers got caught in the crossfire!!! So we had to find Lew a complete change of clothes ... and Janette had to beg for a pair of spare trousers!!! Lew had a fantastic time at physio, he really enjoyed it, and it was marvellous to see him trying to hard! Janette tried to encourage him to sit unaided. It was very difficult for him, but he did manage it for a split second!!! We then zapped home to wait for the Calendar people to come to film Lewis for the 6 o'clock news! I had a quick tidy round (haha me and cleaning dont mix!) and changed Lewis into his own clothes (the hospital clothes were a little bit small!) and then Daddy arrived home looking very smart in his suit! Just after 1.30pm, the Calendar News reporter came and we had a little chat while we waited for the cameraman to arrive - he used satnav and got lost! Advice: if you come to our house, dont use satnav!!! We are not on the maps yet even though we have lived here 3+ years! So we were ready to go! We had a chat about Lewis and then the cameraman was all set up for the actual interviews. It wasnt as scary as I expected but I am afraid I did put on my telephone voice .. arrghhhh horrid horrid horrid! Lew was so well behaved (as he always is!) but he did start to fall asleep, he was soooooo tired! James then had his interview and I had to concentrate really hard on not laughing when he managed to fit in the name of his company, and the name of his boss!! They got cut out of the final interview, phew! Once we had finished the interviews at home, we got ready to head out to the Bluebell Wood Hospice site at Dinnington. The traffic on the M1 was a bit mental so we thought we'd be late but we were okay! We met the Bluebell Wood man and then we followed him in his car to the site! It was a very bumpy ride!! We had some pictures at the site and a bit of video, handed over the cheque and then came home! We were ready for a nice cup of tea! Lewis enjoyed all the attention, he LOVES having his photograph taken so he was in his element having a camera pointed at him most of the afternoon! Home again home again and then time for bed! Lew went straight to sleep and James went out with 'the lads' for his regular Friday night! Saturday! Well we were meant to collect the hire care at 8am and I woke up at ... 7.25am arrghhhh! So it was panic stations trying to get me and Lew ready to set off and we just made it! But I forgot my driving licence (as if I dont have enough to remember in the mornings!). Hire car sorted, we parked for the train station and went up to get the train. I dont think Lewis has been on a train before so it was exciting for him! He loved watching the trains on the platform at Doncaster although getting him on the train was a bit awkward!! As we couldnt fit his chair down the train carriage, we stood up just in the doorway for the 20 minute journey and Lew enjoyed looking out of the window at the world (and other trains) going by! We arrived in York around 9.30am and so we had a wander round, sightseeing until Nicola and Lee and Evie arrived in their car. (That was when we went in Holland & Barrett and Lew was 'spotted'!!!). We met Nic, Lee and Evie at the National Rail Museum and went inside for our 'Day Out With Thomas'!!! We actually saw Thomas the Tank Engine! And Annie and Clarabel! And Toby and Deisel were there too with 'troublesome trucks'! Evie, Nic and Lee went for a ride behind Thomas while we watched. Lew was so excited and so happy, not only to see his cousin and aunty and uncle, but also to see Thomas peep peeping with his steam!! We had a wander around the NRM, bought some Thomas souvenirs, then around 3pm we decided to head home. Back on the train for James and I and Lewis! Lew fell asleep on the way home, he'd had a very exciting day! When we got home, Lew was awake again and enjoyed watching Evie play. At 6.45pm he went to bed, he was soooooo tired and he had a really good night sleep! Sunday - today - well I had planned to go to church at 11.30am and then to go to Joel's 3rd birthday party in Grimsby at 4pm ... but ... Lewis' ng tube was blocked so I couldnt get any medicine or water down it so I had to remove it and (thank you thank you thank you again!) Katie from Bluebell Wood came over and replaced it with a new one! So Daddy and Evie gave Lew a bath and then Katie came and sorted Lew out! Then I got a text from Yolanda to say that Joel was poorly (sickness and coughing and fever) and so his party was cancelled. Poor poor Joel, we are thinking of you handsome fella and hope and pray you are feeling better tomorrow for your actual birthday (or is it Tuesday? You know me and forgetting birthday dates!). So instead we walked round the lake with Olga, Illya and Natasha (Uncle Lee had gone back home again earlier to London until next weekend), Nicola and Evie, and we went to the Cheswold .. but IT WAS SHUT!!! So we went up to the Superbowl and had a game of bowling instead and LEWIS GOT A STRIKE!!! (See photo). We had a great time, Natasha and Illya got the highest scores (81 each!) and Aunty Nicola got the lowest (23 I think haha!). Then we popped to Asda to get some milk (as you do and come out with 3 bagfulls of shopping!) and came back home to see Daddy and Samuel. Lew went upstairs with Daddy to play in his room and to do some 'star gazing' (Lew's new sensory projector 'Laserstars') while Evie went for a nap and the rest of us relaxed in front of the TV! We dont have anything exciting planned for the rest of the day except an early night I think! Love and hugs to all our friends and family.

Friday, February 23, 2007

Television

Well, been a busy couple of days, so will have to catch you all up properly later as its a busy day today as well! This afternoon we are going across to the Bluebell Wood Hospice site to hand over the big (big as in 3ft x 1ft!) cheque for the money James' work raised. And ... Calendar News want to come and film!!! So, watch this space ... and watch the news!

Tuesday, February 20, 2007

Folinic Acid

Lewis' neurologist has been in touch. He has heard from the metabolist Lewis saw in December (Dr Sharrard at Sheffield) and he has suggested we try Lewis on a vitamin called Folinic Acid. Apparently in some children with neurological conditions this has had a positive effect (is it effect or affect, I never know!). So we're waiting for the prescription to come in the post so we can go and get some from the chemist. If you look up folinic acid on the internet, its actually used in conjunction with chemotherapy treatment (http://en.wikipedia.org/wiki/Folinic_acid) - but I guess as with other new uses for drugs, it had an interesting side effect on children with neurological conditons. Amazingly this was also the case, in some people, with dopamine. Dopamine was prescribed to people suffering from Parkinsons Disease ('the shaking palsy') to help to control their involuntary movements. It was recently discovered that in a small amount of people who were thought to have Parkinsons Disease symptoms, they were in fact suffering from dystonia (http://www.dystonia.org.uk/) and by taking the dopa, they were temporarily cured! The effect only lasts as long as the dopa is taken, but how amazing to be in a wheelchair for years and then to have dopa and to be able to walk!! This dystonia is called 'dopa responsive dystonia' and early on it was thought that Lewis might have this, so he went on a dopa trial. Sadly though, this was not the case. But its amazing isnt it? How a drug used for one condition for a long time can suddenly be discovered to cause massive improvement in a completely different condition. A bit like guinea pigs and aspirin I guess (I think thats the story - if guinea pigs had been tested with aspirin, humans would never have used it due to the stomach hemorrhaging - something like that anyway!!! I dont know if I mentioned before, but Laura's nan passed away this weekend. I am certain Laura was a great comfort to her nan in her final weeks. Let's hope that Laura's nan can be remembered for all her happy times, and that this will bring comfort to Laura and her family during this difficult and sad time for them. Marie has arrived from Bluebell Wood (phew!) so I have been able to get a shower. So disorganised this morning because of being so tired. Feel a bit human now! Telephoned hospital to see how Sahn is, but the doctors were in with her so I will have to ring later. Marie helped to get Lewis up and in the bath. Unfortunately (for all of us!) he had an accident in the bath, and bless Marie, she cleaned it all up! She is so good! I was so embarrassed as the lid on my toilet seat broke the other day (I sat on it and it cracked under me!) and because its just in my en suite, I've not been bothered about getting a new one straight away, so I was kind of mortified to have someone see it like that! And the bath was dirty (I hadnt cleaned it after my bath the night before) so Marie cleaned that too before running Lew's bath ... it is so hard to accept help and support, but I guess one has to just give in and accept! We went for a lovely walk around the lake and fed the ducks and the mad seagulls! And saw two alsations swimming in the lake and playing ball with their owners, it was so cool! Well I spoke to Jin Qui and I went into see her and Sahn. She is doing much much better than yesterday, thank goodness! Jin Qui's 2 friends were visiting also. One of them has had formal training in Chinese massage and so she was showin Jin Qui and I how to do this massage (using Chinese pressure points) on Sahn and Lewis. She demonstrated on us first - ooooh it was bliss, just pressing on these small points on the head and chest, it was awesome! Unfortunately though, we missed Musical Minis as the doctors came in to see Sahn and so I couldnt leave until they had finished. I brought Jane home with me and she enjoyed playing with George and Samuel, while Lewis watched and found it very amusing, while I made pancakes! I seem to have become an expert! Last year, I was so useless, Ros and Jane had to take over, even bringing their own frying pans! But this year I was calm itself and my pancakes were absolutely perfect! Must be something to do with the fabulous frying pan that Pat and Paul bought us for a wedding gift! Lots of pancakes were eaten then there was lots of more playing and running around like looneys, which Lewis absolutely loves to watch! Just after 5pm, James came home from work so I took Jane to the hospital to see her mum and then took her home (her dad is at work so Jin Qui's friend is staying to take care of Jane). On the way we popped into the shop to buy some biscuits (James had given Jane some biscuits to take home, but we had left them at the hospital with Jin Qui). Well while we were in the shop, a shop lifter was caught! It was quite scary! Now we are back home and Lewis is in bed, sooooo tired! He went straight to sleep before we even turned out the light! Sadly (for us) George is going home tomorrow. We will miss him sooooo much!!

Monday, February 19, 2007

Sooooooooo tired!

Hello, well Lewis had quite a bad night, neither of us got very much sleep. He was coughing alot, and his antibiotics have affected his tummy (stinky nappies!) and dealing with that in the middle of the night is not fun!! We did go to group at DRI, after we had a lovely chat with the volunteer ladies at the front desk at DRI main entrance who Lewis loves to make eyes at even though he cannot blow kisses at then anymore. We met Marie (Bluebell Wood) and went along to the group. Lewis enjoyed singing, making a picture and a picture frame, and his favourite favourite part of group - the touch screen computer! We are hoping to be able to buy Lewis one of these for his new room when we have saved enough money. Parents are encouraged (what a nice word - Rachel and Jill do you agree that you encourage?! lol) to leave the children at the Monday group so I went for a walk with Daniel's mum and dad, Karen and Craig, and Daniel's sister Heather. Daniel did so well today - he has a walking frame, but today he was walking on his own! He was wobbly, but his centre of balance was good and Kath (physio) was happy for him to keep trying! Well done Daniel! Chanel (who goes to Tuesday group) is in hospital this week in Sheffield - big hugs Chanel, we miss you, and hope you are feeling better very soon. After group, we said goodbye to Marie and we drove to see Granny and Grandad (Maz and Col) for a couple of hours. Lew watched some Cbeebies and then fell asleep in his chair! At 3pm I had to disturb him as we had been invited to Jin Qui and her family's Chinese New Year celebration meal. When we arrived, there was a table completely covered with dishes ready to be cooked and another table set out for everyone to sit and enjoy the food. There was gorgeous fish, tofu, prawns, cockles (I think), mussels, whelks (I think), lots of vegetables and then some gorgeous sweet fruits which were like miniature lychees and are called 'Dragon Eyes'. Jin Qui was very keen for Samuel to come, so James dropped off George and Samuel and they also enjoyed the Chinese feast. I was very impressed with them both - they made a keen effort to use chopsticks and to try most of the food. About 5pm, Jin Qui was very worried about Sahn as she was not responsive and was having trouble breathing and had discharge from her nose which was a bad colour. So I took Jin Qui and Sahn to the hospital (DRI assessment unit) and after seeing the doctor, Sahn is to stay in tonight. She was very poorly and I was very upset to see her like that and not to be able to help. I hope you will all pray for her tonight and for Jin Qui to continue to have the strength to care for her gorgeous little girl. Lew came with me to the hospital (to see all his friends!) as James had plans to go out this evening to a Gentlemen's Evening so he collected George and Samuel from Jin Qui's house when I went to the hospital. I took some very cute photos of Lewis today - Granny bought him some long socks - they come up to his knees (well almost over his knees!) and unfortunately he had an accident of the nappy kind at Granny's house so he had no trousers on, so I took some pics of him with his cute little knees and his long socks! I will put them on the blog tomorrow. Lewis fell asleep in his chair again (!) at the hospital which is not surprising since he had an unsettled night, and it was also past his bedtime when we left, but I wanted to make sure Sahn was going to be admitted overnight before I left Jin Qui. When we got home, I took Lew straight up to his room and got him ready for bed and I could tell he was definitely glad to be in bed!! I missed a birthday yesterday - HAPPY BIRTHDAY JONATHAN 14 now!!!! I hope you had a lovely day and I hope I can get across to see you all soon as I am sure Lewis is missing Alfie and Spencer (chihuahuas) and Hollie (border collie)! Tomorrow, we have group in the morning (IF we can possibly get out of bed before midday!) and then in the afternoon we have musical minis. Jin Qui, Sahn and Jane were coming after for pancakes - YES ITS PANCAKE DAY TOMORROW! - but with Sahn being in hospital now, I think that will be cancelled, but I will see if I can go and collect Jane and bring her as she has been so excited about coming to our house to visit and she loved playing with Samuel and George today. Whenever she talks to Lewis, he always has the biggest smile! This evening at the hospital, Jin Qui was talking to him while she massaged his hands, and he gave her the biggest smiles and was trying to talk to her! It was so wonderful to see! Today in the post Lewis received 3 postpal items. A letter from America, A birthday card, and a parcel. The parcel is a bday pressie I think so we will save this and the bday card until next week (cant believe its Lewis' 3rd birthday next week!) but I will open the US letter for him tomorrow as we havent had chance this evening. But for those who have sent these 3 items to us that arrived today, I hope you read this blog so that I can tell you how lovely it is to receive letters and cards and of course gifts in the post and how much Lewis enjoys 'helping' to open envelopes and packages! I just want to say hello to some people who have been neglected recently. We may have been quiet (busy busy busy) but you are always in our thoughts: Yolanda, Stephen, Naomi, Joshua and Joel; Angela, Ashley and Hannah; Lesley and Kevin, Liam, Callum and Tobey; Annmarie, Savannah and Shannon. Far away you may be, but we still love and miss you all! And Laura - you are totally the best and I am looking forward to all your updates!

Sunday, February 18, 2007

Happy New Year - Chinese Year of the Pig

Hello and Happy New Year. We have just arrived back from the Chinese Church after a wonderful service, a very moving sermon and lots of lovely Chinese food!!
I didnt think we would be able to make it as Lewis had a bad night, hence so did I. He is feeling very poorly so is dosed up with calpol and nurofen and I think I know how he feels as I also have a sore throat, aching body and an erratic nose (blocked then runny!). Hopefully Lew will shake the infection off quickly and his antibiotics will help.
Jodie came with us to the Chinese Church and although it was a very new experience for her, I dont think it was a negative one! Jodie found it very good, but difficult to understand. I have found that the more time I spend with my Chinese friends, the easier it is to understand their English. And Jin Qui's English is improving all the time! Jane (Jin Qui's 4 year old daughter) went on the stage to sing a song in Chinese and everybody loved to hear her! She is very confident! Some of the other children performed, we had a piano recital, some ceilidh dancing and some singing and music. I received a new year blessing. Jin Qui's husband gave a very moving speech about Sahn and how she was on a ventilator and the doctors advised them to switch it off, and how Sahn started to move and breath for herself and what a miracle it was.
As for Lewis - well he slept through most of it!!!!!
So now we are chiling on the sofas watching Winnie the Pooh and all very tempted to have an afternoon snooze!
Happy Birthday Jodie (the other Jodie) - she is nearly 30 (haha she's 24 I think!) and it is her birthday today.

Saturday, February 17, 2007

Infections

So why is the worry of Lewis getting a chest infection such a huge worry for us? Well, first of all, as he cannot move voluntarily like most children of his age, he cannot clear saliva and mucus which build up in his upper respiratory area. This increases the risk of a chest infection. Secondly, as his swallow ability is not very good, there is a high risk of aspirating his own saliva. Finally, due to the gradual deterioration of his muscles, there is a real concern that the muscle around his lungs will start to fail and this would seriously effect his ability to breath. So its quite a big worry! Lewis had a reasonable night, I had to go up to him a few times as his coughing was distressing him. This morning he was having alot of difficulty with his breathing and coughing so he came down to bed with me to watch Milkshake for an hour and then he went back to sleep until 10am! We both certainly needed the extra zzzzzzzz's! Today we are going to look at flooring for the conservatory - cheap and cheerful, thats us! We want to get it ready for Lewis' birthday party on 28th February, fingers crossed we can! We had some upsetting news this weekend about a very good friend of mine. His name is William and he has a twin sister called Bethany and twin younger sisters (!!) called Elisha and Emily. I met William and Bethany (and then the rest of the family, includinng mum and dad, Karen and Joe) when I was working at St Francis Xavier School in Balby, Doncaster. William contracted meningitis when he was very young and has had problems resulting from this including many operations. William is now 9, or 10, I think!! Anyway, he is the must scrumptious young man, as are all his family. They are the kindest people you could ever hope to meet and the children, well you can tell that Karen and Joe are very very good parents. Well, William has been in hospital recently and has been diagnosed with type 1 diabetes (the type that requires regular insulin injections) so William (and the family) have another hurdle, another thing to deal with, but they will take it in their stride and get on with it, as one does. Please please send your prayers to William and his family. If you are coming to Lewis' birthday party on 28th, you will meet the family yourselves! And Joel - I am soooo sorry I got your birthday wrong! You are in fact 1 day older than Lewis, your birthday is on 27th February!! I would like also to mention a very special person who we came into contact when we were looking for an au pair. Laura (lawse/peanut) is a young lady from within UK who is Lemar's BIGGEST FAN EVER and who has also become a very good virtual friend. Laura has written to us, sent cards and emails and is a very very kind and understanding person - maturity far beyond her years. Laura has very kindly offered to start some fund-raising for Lewis so watch this space for news and updates on Laura's exploits (which I hear will include abseiling and celebrities!). Thank you Laura, for being you!

Friday, February 16, 2007

Hospitals

Hello! Well Lew had a reasonable night, but lots of coughing. This morning he was totally not himself at all. He was lethargic, unhappy, with a high temperature, and lots of harsh coughing. At around 11am we realised he really needed to go to hospital for a check up so we rang and then took Lew to the assessment unit at DRI. They checked his temperature which was a little high, but his SATs were fine. Lew was observed for a few hours (while he observed Toy Story on the video!) and then they let us come home with orders to bring him straight back in if his temperature goes any higher and they will then get a chest x-ray and go onto iv antibiotics. Lew is safely tucked up in bed now so fingers crossed the antibiotics we started him on last night (consultant prescribed some for 'just in case' which we got in powder form and just had to mix with water when we needed them) will do the job on his infection and he'll not need to go back into hossy. A good thing came out of going to hospital though - we bumped into our friends Rachel and Nick and their little girl Heidi. Heidi was born with a kidney condition and so is special in her own way, but she was in the assessment unit for a possible chest infection as well. Fingers crossed she got to come home not long after us. Our conservatory now has glass in it - whooopeeee! Just got the electrics and plastering to be done then its finished and ready for flooring and heating. Social services came out today to go through the specifications for the garage conversation which will become Lewis' bedroom and bathroom when it is finished. Our house guests left this morning. Wendy has gone to Cologne with Anna to visit an ex-au pair of theirs who has just had a baby. Andrew has gone back to Lymington, to work I imagine! George is staying with us for a few more days and James is meeting Wendy in London on Wednesday where he will hand George over - sounds like a kidnapping arrangement lol! Maisie of the chicken pox is recovering very nicely and her little brother, the gorgeous Oliver, is showing no signs of developing them and neither (fingers crossed!) is Lew! Joel, our good friend Yolanda's youngest son, celebrates his birthday soon (1st March I think!) and so we will be going across to Grimsby to see them for his party (which is not on the 1st March). Samuel has spent the day with George at Marions and Colins house (Granny and Grandad), making the most of the last few hours with their cousins Katy and Emily who are back off home to Leamington this evening. Not much planned this weekend except to celebrate Chinese New Year (Year of the Pig) at church on Sunday.

Thursday, February 15, 2007

Newspaper

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

Monday, February 12, 2007

Indians

Indians ... jalfrezi, tikka masala, balti ... etc ... James and the other menfolk have gone to Aagrah for an indian meal, and us ladies have stayed home and had ... AN INDIAN!!!! But ours was from Asda, and so cost alot less than the Aagrah will have cost the blokes! Jodie and Nicola have come over, as well as Marion, Lucy (Wendy is staying with us anyway), Katy and Emily, Anna and George (staying with us anyway). And of course, our friendly massage man! Ian has come too hooray! He is giving Lucy a massage at the moment as Lucy is feeling a bit rubbish with a cold and a cough. We are now very full up with food! Today Lewis and I were supposed to be at Silver Street for 9am but we didnt actually get up until 9.30am so we were a little teensy bit late! We went for the last 20 minutes, then came back home again in time for the direct payments lady to talk to us about Lewis getting some direct payments support. At 1.3opm Katy and Marie came from Bluebell Wood, but unfortunately Lewis was a bit miserable (tired) so Marie didnt see his best side! We went to Asda to get some food (indian!) and then Lewis and I went to see Jin Qui and Sahn and Jane. It was lovely to see them and we spent some time looking on the computer at a website for a very good chinese hospital which specialises in neurology. I had some delicious chinese tea, and Jin Qui gave me a box to bring home! Sadly I had to come home to get Lewis ready for bed, as Jin Qui was preparing a chinese meal which smelled delicious!

Sunday, February 11, 2007

Chinese New Year

Hello again. Well we went to the Chinese Church today and it was so wonderful again. We felt so welcome and we were provided (again) with an interpreter so there were 3 languages going around! Cantonese, translated to Mandarin, and to English for me!! Jin Qui made a speech and it was so moving, everybody was crying in the Church! She spoke about how Shan was so poorly and how they had said she would die and how she had fought back, but how hard it was with her being so poorly, and she spoke about me and about Lewis and how we had become friends even though we dont share the same language. Luckily I had prepared lunch and done some ironing before we left for church as we didnt get back until 2pm and our house guests had arrived! Lewis was so excited to see Anna and George and of course so was Samuel. George and Samuel are best pals, it is so good to see them together. We had a lovely (huge) lunch. I flung together various stuff in a sort of Greek theme. We had lamb, rice, cous cous, feta cheese, stuffed olives, aubergines, stuffed vine leaves, and then ice cream and fruit for pudding, yummmm! Oh and Wendy and I had a glass of wine which was also rather lovely! This afternoon we went for a refreshing walk around the lake and to feed the ducks but somebody (MEEE!) forgot the bread so the ducks had to go without!!! Granny and Grandad and Katy and Emily arrived not long after our return and then a short while ago we put Lewis to bed, he was soooo tired! He has had a very busy day! I am still full from lunch so no more food for me, but I think James is making everyone a sandwich now! Me ... I'm going in the bath then going to bed as we have a busy day tomorrow (me and Lew with appointments) (everybody else with family outing to Castleton). Oh and Chinese New Year ... well next week is the Chinese New Year (Year of the Pig) and so the Church next week is having a special service and also everyone brings some food for the meal after the service - a chinese banquet! They asked me today 'do you like chinese food?' ... DO I EVER!!!! And I can even use chopsticks, but I think I will be worse at using them than the small children who go to the church! But I dont mind! Goodnight, God Bless xxxx

Saturday, February 10, 2007

Numbers

Well I havent seen much of Lew today! I have been busy with numbers! Stuck in the office doing accounts ... zzzzzzz ... horrid job! So Lew has spent most of the day with his dad! We did go to Tesco around midday for some yummy food for lunch tomorrow as we are having house guests next week - Wendy and Andrew, George and Anna. We are very excited!! Also, Lucy, Katy and Emily are coming up for the week but they are staying with Marion and Colin. We are hoping to do some nice stuff each day this week, all together as much as possible. I also sorted out birthday invitations for Lewis' party on 28th February! Posted the ones that needed posting, just got to hand out the ones that I can hand out now. Had a phone call this afternoon from Jin to say that Xian is back in hospital with a chest infection. So I became the visitor on Ward 31 rather than the visited! I didnt take Lew because you dont know what you might catch in hospital lol! Had a nice chat with Jin and gave Xian a kiss and then came back home to put Lewis to bed. He was sooooo tired, he fell asleep while we were getting him ready! So please this evening, spare a thought (and a prayer) for Xian. Jin is a Christian and so she really will appreciate your prayers for her little girl. Now I am going to get myself a bath and get to bed as I am soooooooooo tired!

Friday, February 09, 2007

Bird Flu?

Nope ... chicken pox!! Maisie has suspected chicken pox so please lets hope that its not too traumatic for her (or for her mum Denise!) and that please please please Lewis doesnt get it!!! Got baby massage today, Barbara is popping in at midday, then Kath (physio - Lew's favourite favourite person NOT!) is coming this afternoon! PS ... I have changed the settings so that now you (ANGELA!) can post comments!!

Thursday, February 08, 2007

Snoring, snowing, snoozing!

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

Thursday, February 01, 2007

Fishermans Pie

Well, been a bit busy since Sunday! Hence the delay in updating! What day is it today? Thursday, right! So Monday we went to the hospital group as usual. Lew had a great time as usual, but not as usual, I went out into the outpatients waiting room rather than staying in with Lew and he had a great time! He enjoyed singing and playing with sand. At home we had a very very busy afternoon! Denise, Maisie and Oliver came over for a cup of tea and then the Homecare people came about giving Lewis 2 x 2 hours a week and then Marion (Granny) and Pat arrived for a visit and then our old social worker arrived with our new social worker! So it was very busy in our front room!!! When all the social work and homecare people had gone, the car seat man came about a special car seat for Lew. The seat was fantastic!!! And even better ... we can apply for funding from a charity for the cost of the seat (£700). On Tuesday we went to group at the hospital again. Lew again had a great time. He particularly loves playing on the touch screen computer. Then we came home to collect Mun and Livia and went to musical minis which was great! Lew really enjoys it! While we were there we saw Barbara, Luke and Ellie. Denise, Oliver and Maisie came a bit late (!) but better late than never! Lew absolutely loves the hokey cokey!! Afterwards, we all (us, Denise & co, Mun and Livia) went to the Yorkshire Outlet for a cup of coffee and a play in the play area. Lew loved watching the children playing in the soft play and I took him in for a bit to play in the ball pool. We bought Daddy a couple of football shirts (£3 each!!) and I bought Lew some nice new pillows for his bed. On Wednesday, we got up a bit late (lovely lovely lie in!) and around midday Lew and I popped to Asda. Then Barbara came for a visit at 2.30pm and at 4pm Katie from Bluebell Wood came. It was great to spend time with Barbara - Lew is really getting used to her. And Katie is one of those people who is just so kind that you immediately feel that you trust her completely and she's just adorable! We love her already! Lew spent the entire time making eyes at her - he's a terrible terrible flirt! After Lew was in bed (he was soooo tired after his busy day!) I went across to Mun's for a cup of tea and some chin wagging with Mun, Teresa, Olga and Van. Paulash (Mun's husband) had gone to a party and wasnt coming home until the next day! Good party!). Our conservatory is coming along nicely - the bricklayer man has been here all day yesterday and today and says he should be finished tomorrow. Its very exciting! Today we had another lie in (we are allowed lie ins because Lew finds the nights quite restless with his congestion and coughing) and then we collected Mun and Livia to go to nursery. Lew was so excited to see his friends at nursery! At 1pm Mun came back and we all went for lunch at the Lakeside Village. Lew has been having stage 1 baby food and he's been enjoying the sensation of eating ALOT!! He always was a big fan of food and its been a real struggle for him not being able to eat anymore, but we noticed he was swallowing his saliva quite well so we tried him with some food and he almost bit the spoon off!! He's definitely enjoying having food again! (Oh and he loves pureed fishermans pie!) After lunch we came home to drop off the car and we went for a lovely walk around the lake with the pushchairs. It has been such a beautiful and warm afternoon, we have certainly benefitted today from the good weather. Samuel and James are off to his school this evening for Samuel's options evening so I'll be getting Lew ready for bed soon. Yesterday, he got a lovely parcel in the post - Aunty Lucy, Uncle Mike, Katy and Emily had sent Lew a parcel of 4 mood beams! They are the cutest little shaped characters which flash or phase different colours and Lew loved looking at them last night at bed time! We got a letter today from Laura - thank you so much! We are so sorry to hear that your nan is not doing well at all. This will be a very difficult time for you and your family, we're thinking of you. Thank you to our postpals for your emails and e-cards. I'll try not to leave it too long before our next update! Goodnight all!

Fishermans Pie

Well, been a bit busy since Sunday! Hence the delay in updating! What day is it today? Thursday, right! So Monday we went to the hospital group as usual. Lew had a great time as usual, but not as usual, I went out into the outpatients waiting room rather than staying in with Lew and he had a great time! He enjoyed singing and playing with sand. At home we had a very very busy afternoon! Denise, Maisie and Oliver came over for a cup of tea and then the Homecare people came about giving Lewis 2 x 2 hours a week and then Marion (Granny) and Pat arrived for a visit and then our old social worker arrived with our new social worker! So it was very busy in our front room!!! When all the social work and homecare people had gone, the car seat man came about a special car seat for Lew. The seat was fantastic!!! And even better ... we can apply for funding from a charity for the cost of the seat (£700). On Tuesday we went to group at the hospital again. Lew again had a great time. He particularly loves playing on the touch screen computer. Then we came home to collect Mun and Livia and went to musical minis which was great! Lew really enjoys it! While we were there we saw Barbara, Luke and Ellie. Denise, Oliver and Maisie came a bit late (!) but better late than never! Lew absolutely loves the hokey cokey!! Afterwards, we all (us, Denise & co, Mun and Livia) went to the Yorkshire Outlet for a cup of coffee and a play in the play area. Lew loved watching the children playing in the soft play and I took him in for a bit to play in the ball pool. We bought Daddy a couple of football shirts (£3 each!!) and I bought Lew some nice new pillows for his bed. On Wednesday, we got up a bit late (lovely lovely lie in!) and around midday Lew and I popped to Asda. Then Barbara came for a visit at 2.30pm and at 4pm Katie from Bluebell Wood came. It was great to spend time with Barbara - Lew is really getting used to her. And Katie is one of those people who is just so kind that you immediately feel that you trust her completely and she's just adorable! We love her already! Lew spent the entire time making eyes at her - he's a terrible terrible flirt! After Lew was in bed (he was soooo tired after his busy day!) I went across to Mun's for a cup of tea and some chin wagging with Mun, Teresa, Olga and Van. Paulash (Mun's husband) had gone to a party and wasnt coming home until the next day! Good party!). Our conservatory is coming along nicely - the bricklayer man has been here all day yesterday and today and says he should be finished tomorrow. Its very exciting! Today we had another lie in (we are allowed lie ins because Lew finds the nights quite restless with his congestion and coughing) and then we collected Mun and Livia to go to nursery. Lew was so excited to see his friends at nursery! At 1pm Mun came back and we all went for lunch at the Lakeside Village. Lew has been having stage 1 baby food and he's been enjoying the sensation of eating ALOT!! He always was a big fan of food and its been a real struggle for him not being able to eat anymore, but we noticed he was swallowing his saliva quite well so we tried him with some food and he almost bit the spoon off!! He's definitely enjoying having food again! (Oh and he loves pureed fishermans pie!) After lunch we came home to drop off the car and we went for a lovely walk around the lake with the pushchairs. It has been such a beautiful and warm afternoon, we have certainly benefitted today from the good weather. Samuel and James are off to his school this evening for Samuel's options evening so I'll be getting Lew ready for bed soon. Yesterday, he got a lovely parcel in the post - Aunty Lucy, Uncle Mike, Katy and Emily had sent Lew a parcel of 4 mood beams! They are the cutest little shaped characters which flash or phase different colours and Lew loved looking at them last night at bed time! We got a letter today from Laura - thank you so much! We are so sorry to hear that your nan is not doing well at all. This will be a very difficult time for you and your family, we're thinking of you. Thank you to our postpals for your emails and e-cards. I'll try not to leave it too long before our next update! Goodnight all!

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!