C/O 21a Grange Road,
Bessacarr,
Doncaster,
South Yorkshire,
DN4 6SA
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Lewis J's Parents/Guardians

Samantha and James

Lewis J's Siblings

Samuel 08/05/1993, Xbox, computer, making animations

Lewis J's Interests

Books, stories, balls, other children, animals, feeding the ducks, Cbeebies, In The Night Garden, Horrid Henry, Chucklevision.

Lewis J's Favourite Colour

None

Is Lewis J able to read?

No

Is Lewis J able to use hands?

No

Is Lewis J visually/hearing impaired?

No

Does Lewis J suffer from any developmental delay?

No

Favourite type of post?

Postcards

Story updated 2010

Lewis was born on the 28th February 2004 and everything went really well. Lewis grew and developed normally, although he started sitting up a little late at around 7 months and started walking a little late at around 17 months. At around 6 months Lewis started having Reflex Anoxic Seizures - he holds his breath until he turns blue and passes out. By the time he was 2 he was walking absolutely fine, just like your average 2 year old.

Not long after his 2nd birthday he started to limp on his right leg. This was diagnosed as irritable hip. After around 8 weeks he was able to walk again normally. Mid April 2006 he stopped walking completely and would only crawl. In May 2006 we saw a specialist and Lewis started on physiotherapy and a whole bunch of tests. In July 2006 Lewis had his first epileptic seizure. In August 2006 he had an MRI. In September he had a second epileptic seizure. Whilst we were in hospital for this second time, Lewis had ECG and EEG and several blood tests. His EEG came back abnormal. In October Lewis started to have regular epileptic seizures and was put on a treatment programme.

From around September 2006 Lewis' condition worsened considerably and he became unable to sit up unaided. By November 2006 he could not sit or even support his own head and physically all he can now do is lie on the floor. He can use his hands although he is very shaky and he can sit in a special chair with the correct support all around. In November 2006 Lewis went into hospital for a lumbar puncture and tissue and muscle biopsies as the doctors have still not been able to diagnose the condition Lewis has that has caused his physical condition to deteriorate. 

Now in 2010, Lewis remains undiagnosed although last year we did think we had found out what was wrong with him, but unfortunately it was not the case. Lewis did test positive for a bacteria which has been found to cause Lyme Disease, but when the test was re-done it came back negative and so we think that Lewis may have been bitten by an infected insect at some point, but that this did not cause him to become ill back in 2006. Lewis has had several more tests since November 2006 and all have come back negative or normal.

Lewis' latest MRI scan did show some deterioration in his brain (cerrebular atrophy) which the doctors believe is post-infectious but they don’t know what infection caused it, or when! More frustration! 

Lewis has just re-started a course of therapeutic antibiotics as he was on these for 6 months last year and we did see improvements in his head control, he tried to speak, and he tried to reach out for things effectively, but unfortunately in December 2009 we had to stop the treatment as Lewis was fitting every 10-12 minutes and we couldn’t work out why. He spent a lot of time in hospital leading up to Christmas and finally came home on Christmas Eve but didn’t really recover fully for several weeks. 

He's been well (fingers crossed) for a couple of months now so we have re-started the treatment in the hope that we will see the improvements again, even though nobody actually knows why the antibiotics are helping him!

Lewis is an incredibly happy chap, despite all his problems, and he loves to spend time with the other children and interact with them as much as possible. Even though Lewis can't speak or move, his intelligence is normal for his age and he is a very cheeky and incredibly lovable young man whom we adore!

Update 29th June 2010

Not much to update. Lewis is still doing well on his antibiotics and we are hoping to get another MRI scan done soon to see if there have been any more changes to Lewis' brain. 

Lewis went into hospital for day surgery recently to have his PEG (stomach feeding tube) changed into a button (easier, more compact). Unfortunately, Lewis has grown so much since he had the original PEG put in three years ago, that it wasn’t possible to give him a 'button' - the hole in his stomach and the hole in his skin had grown too far apart!! So he's got a sparkly new tube for now and we hope to try again with the button in a few months! 

Lewis is going to a hospital near London next month to have some bloods taken for some specialist tests to be done at a Lab in America so we will hope to get something useful from them.

Lewis' kittens are growing fast although he only has three now. Sadly, we lost one of them to a car accident. We are all very sad, but the two brothers and sister left behind have become super affectionate which Lewis absolutely loves!

Lewis recently spent the weekend at his Daddy's house as his aunty and cousins were visiting from Australia. It has been almost a year since he last saw them so he had a great time catching up with the family and having his cousins sing and do shows for him - I believe the videos are on Lewis' facebook page for all to enjoy!

Thank you to everybody for the emails, the letters, and the postcards Lewis has received. I am sorry that sometimes there is quite a delay in responding to them - sometimes it really can get super busy here!

Best wishes to you all from all of us until next month!

Update 26th April 2010

We have been brave this month and re-started Lewis on his antibiotic therapeutic treatment to see if we can re-gain the improvements we saw in him last year (i.e. holding his head up for prolonged periods of time and trying to speak and reach for things). Since we stopped the treatment in December (due to increased seizures and hospitalisation) Lewis has lost his head control completely and doesn’t try to speak at all or seem to have any control over his reach which has been very sad, but we needed to sort out the seizures before they did some serious damage to his brain. Now the weather has started to improve, it seems like a good time to start over as Lewis is usually (fingers crossed!) very well in the spring/summer months and he looks great with a little bit of a tan!

Lewis' cat Chelsea had her 4 kittens - Patrick, Blondie, Tig and April! They are such characters and now they are almost six weeks old Lewis loves to watch them playing around and they are very happy to climb all over him and keep him entertained!

Lewis' neuro-physiotherapy with Anna is also going really well and we really do feel that Lewis is benefitting from the weekly sessions. Now that Lewis is back on his antibiotics, we might even see some bigger improvements than before!!

Lewis' big brother Samuel will be 17 next month - very scary how fast time goes by!

Lewis has received so much post this past month from Post Pals, he's had something in the post almost every day! I have put photographs on his Facebook page of Lewis with his post so if you have sent him something, please do take a look at Lewis' photo albums or visit his website!

That's it from us for now - its so very busy here, sometimes I just don’t know where to start! Love to all of Lewis' friends until next time!

Update 3rd March 2010

February was Lewis' 6th birthday month so it was definitely up and down. Part of me was very excited about my little boy being a year older, but another part of me was so scared and hurting because Lewis can’t do the things he could do before he got ill... the things a 6 year old should be doing… so I've had a few tearful episodes. As usual though, Lewis' smiley face has cheered me up and Lewis' older brother Samuel has helped me loads with hugs and heart to heart chats - for an almost 17 year old, he's a top young man!

Lewis' health has been up and down this month. He's had a mild chest infection and a severe tummy bug and had lots of time off school and in bed watching DVDs! He had a brief visit to hospital for assessment and to get some antibiotics then it was straight back home again - we are trying not to stay in unless it really is very serious. Lewis is better off at home where we can care for him properly unless he needs very intense monitoring / treatment that only the hospital can provide.

As physiotherapy is inconsistent and patchy (I am guessing due to huge staffing issues?) here in Doncaster, we recently got in touch with a paediatric neurological physiotherapist to come and assess Lewis. The assessment went really well and Lewis' Fund is going to pay for Anna to come once a week. Lewis had his first session yesterday and although it wore him out and he found it quite difficult, we know that it will help him hugely so we're very excited about that. We are also waiting for Lewis' new antibiotic prescriptions to arrive as we are re-commencing his intense antibiotic treatment programme now we have ascertained why his seizures increased massively in December (the antibiotic he was on for 6 months increased the levels of anti-epileptic medication in his liver - when we changed antibiotics at the beginning of December, the anti-epileptic levels effectively dropped, hence the increased fitting - Lewis' medication has now been increased and he will be even more closely monitored this time around).

Lewis' cat Chelsea is going to have kittens! She is huge and waddles a lot! Her kittens are due mid March so we're very excited about that!

So on to Lewis' birthday party - what a fantastic day Lewis had! He got so many wonderful gifts from friends, family and lots of Post Pals posties! There are photos on his website and also on his facebook page! Lewis had a Science Boffins party - James Boffin came to our house with his white coat and his experiments, and he performed stinky, messy, exciting, fun experiments for and with the children! It was a great entertainment and we will definitely be meeting up with James Boffin again in the future for more science fun!

As usual, thank you Post Pals for your amazing work. Samuel asked me the other day how Post Pals started and who did all the work... I explained about Viks and how we had met at the Post Pals party last summer - I might even be able to get him to come along this year!

Update 4th February 2010

What a mad couple of months! As you may remember, Lewis was in hospital a lot of December due to his massively increased seizures. We took him off his antibiotics while we tried to work out why he was having so many seizures instead of the 2-3 a month - he was having a seizure every 5-7 minutes constantly - he was exhausted, we were exhausted - and we didn’t know what to do. Lewis came out of hospital on 24th December but was ill on Christmas Day. He did friends - thank you so much! A very special package Lewis received was from a class of students in Korea! Each student had hand-drawn Lewis a little Christmas card with a personal message. He loved to read these and to look at the drawings and I will take a photograph for Post Pals as the students heard about Lewis on the Post Pals website!

At the beginning of January Lewis had another cluster of seizures resulting in a visit to A&E at which time he had to be given so many drugs to control the seizures that he did actually stop breathing. It was the most terrifying moment of our lives, seeing Lewis lying there, unconscious, covered in wires and tubes, and then for him to go completely still. All the alarms went off and the crash team came running down the corridor into the room. I was just a screeching headless chicken, running in and out in a major panic and shouting at Lew to stop being silly (funny the things you say when you panic!). Anyway, after a short while the team got him breathing again and he remained stable (but still unconscious) for several hours. The medicines did their job though and he has been seizure free until this past two days where he has had two single seizures - I am very very nervous about giving him any rescue medication after what happened last time, although I know the time will come when I will have to so let us hope he doesn’t need so much this time and that he recovers quickly from the next seizure cycle.

Since Lewis has been off his antibiotics, his head control and improved cognitive abilities have gone, so we are very sad about this and keen to re-start the antibiotics, but without the suspected side effect of increased seizures. It’s going to be a difficult time but we want the best for Lewis and of course we want him to get better. Hopefully one day we'll be able to find out what is wrong with him and then find a cure - what a miracle!

We are now looking forward to Lewis' 6th Birthday at the end of this month. Lewis is having a science boffin party - lots of fun, colourful, noisy experiments to watch! Lewis has grown a huge amount in the past couple of months and continues to grow out of all his equipment! We are hoping to apply to a charity to take Lewis to Walt Disney World in Florida later this year. We feel Lewis is now old enough to appreciate this and we hope he would be well enough to travel - the charity arranges specialist seating on the flights so this would be such a huge thrill for Lewis to enjoy - we'll see and let you all know!

Lewis continues to receive letters, postcards and gifts from Post Pals friends and he is always very excited to see his name on the front of envelopes! As December and January have been so very busy and stressful, I haven’t had much chance to update Lewis' website with photos of him with his Post Pals post, but I will be doing this shortly. 

Lewis continues to enjoy school and is doing well on his eye computer! 

As ever, thank you Post Pals and friends for everything. What would we do without you?!

Update 4th December 2009

Lewis has been very poorly recently, having lots of seizures and therefore spending a lot of time in ambulances and in hospital. He is in hospital now as his seizures are not stopping at all and his usual rescue medication has not been able to stop them. Lewis is being tried on an extra strong anti-epileptic drug and if this doesn’t work then they may have to anaesthetise Lewis (like a drug induced coma) while they try to work out what is wrong. 

We have put our Christmas decorations up at home but Lewis hasn’t been able to see them as he's been in hospital since 1st December. He is being well looked after in hospital though and there are pretty lights up for him to see here.

Thank you very much to Post Pals for the postcards, cards and letters Lewis has received in November. He does have a couple of cards at home that have arrived from Post Pals which we haven’t opened yet - if he is in hospital for much longer we will bring them in here and decorate his room with them!

Update 2nd November 2009

It has been very busy here since our last update. Lewis has been on his antibiotic treatment for suspected Lyme Disease (although this still hasn’t been confirmed) and we are awaiting further tests. Lewis is due to have nerve conduction therapy and a sleep deprivation EEG on 2nd December. We are also still awaiting detailed feedback on a recent MRI scan which showed changes to his brain. Lewis continues to grow and is becoming very tall and heavy! He's definitely having a growth spurt! He has been managing really well (fingers crossed!) with his feeding programme and so this has helped his weight a lot and has also given him a bit more strength in his neck area so he can hold his head up for a few minutes at a time now if it is gently supported.

Lewis has received lots of post from Post Pals posties - he received a blanket, some garden lanterns which we will try setting off on 5th November, he received some lovely books and a glove puppet elephant, he received some very spooky Halloween cards and a Halloween candle! Thank you to everybody for his lovely postcards, cards and letters! Lewis loves to receive post with his name on and does get very excited! We do try to remember to take photos of Lew with his post and I will get around to putting these photos on his website soon!

Lewis is loving school and enjoying baking (although of course he can’t eat what he bakes so Mummy and big brother have to help out there!). Our two cats have taken a shine to Lew, I think they realise now that he won’t pull their tails, so they like to spend time sat with him which he loves! He finds it especially funny when they jump on the side of the bath in the mornings! We also have two chickens which are now huge and Lewis finds these very amusing when they are running and flapping around the garden!

Lewis still loves In The Night Garden... his favourite episode is when the Tombliboos clean their teeth... so I have recorded this one for him to watch! He laughs out loud when watching this one which is great to hear and see! He is, as ever, a super happy young man who never fails to charm everybody he meets!

Thank you once again Post Pals for everything!

Update 3rd August 2009

Lewis' health has been up and down this past month. He's definitely showed some signs of improvement, so we are now wondering if it’s the antibiotics we are paying for him to have to treat the possible Lyme Disease, or if it is just the nice weather we've been having! Lewis is definitely more in control of lifting up his head and turning his head to look to either side which is pretty special! He's been on the antibiotics for 3.5 weeks now and we hope to see further improvements in the next couple of months at which time we will decide whether or not to continue with the medication. 

Lew has an MRI, lumbar puncture and blood tests under general anaesthetic booked for the end of this month, so that’s a bit scary given how badly he reacts to anaesthetic. It’s for a good reason though so fingers crossed we'll get some good news from the results. 

In the past month Lewis has been to Scarborough with Mummy, where he wasn't very well with a 48 hour bug, and then to Blackpool with Daddy, Granny and Grandad where he had a great time.

Lewis' kitten Chelsea entertains endlessly as do the 2 chickens we now have in our garden!

Thank you Karen Sami for the lovely cards that always cheer us up. Thank you to Sarah for Hugo Mouse who goes everywhere with Lew and also to Helen for the Winnie the Witch books and CDs!

Update 29th June 2009

It has been an immensely busy couple of months. After Lewis had blood tests sent away to a private lab in Germany in May, we were told that he had tested positive for Lyme Disease. This was amazing news as it might mean that Lewis could be cured in some way. Of course the first question was if Lewis was ill because of Lyme Disease or if it was just something else that he's got but that is not causing his current undiagnosed condition. Since then we have hit a brick wall as far as treatment is concerned. There is so much controversy around Lyme Disease (even its existence is questioned by some) and so we are fighting now to get Lewis started on antibiotics because we feel that we must try. If the antibiotics don’t work, at least we can say we made this effort for Lew. And if they do work... it will be a miracle!

Lewis has been in hospital this month due to increased seizures and unexplained rashes. He is home now but definitely not 100%.

He has got a new kitten called Chelsea who loves him! She sleeps with him, climbs all over him, purrs at him, and makes him laugh and smile! Lewis is also a lot more 'talkative' (trying to vocalise) which is wonderful for us! He is so happy at the moment and it is always great when Lew is having his up periods as it helps us through the bad times when he is very ill and not our bubbly little man!

Thank you to Karen for the Iggle Piggle t-shirt and thank you to Sarah for the 'book about me' which Lewis loves! We are looking forward to the Post Pals party this weekend and hope to see some posties there!

Update 31st March 2009

Well Lewis is 5 years old now! We have had a busy time with him having tests for various conditions - always searching! He had the conclusive test for Lyme Disease and this did come back negative. We are still pursuing the possibility of 3 months IV antibiotics to see if there is any chance that the test was not correct (apparently this can happen with Lymes – it is a very elusive disease to pin down!). We also have on the horizon some new tests for Lewis. We are waiting for an appointment for nerve conduction testing - where small electric shocks are passed through Lewis' nerves to see how fast (if at all) they travel from one place to another. Also, Lewis' hospital is getting a new super MRI scanner in April and Lewis is on the waiting list to have a scan on this machine to see if it can pick up anything that his other regular MRIs have not. We are also hoping to see a brain specialist about the possibility of Lewis being suitable for deep brain stimulation surgery - so lots of things coming up. Lewis’ hip surgery has been cancelled. We were not happy to go ahead with the surgery once we realised how permanent it was (cutting his abductor and adductor muscles) given that there is a chance of recovery - as long as we have no diagnosis at all, then there is always hope. With Lewis, he has absolutely no diagnosis, not even some vague idea. The medical profession is totally confused by him which is good in a way as it means he is quite high on the new tests list!

Thank you so much to pals for Lewis' birthday cards and presents at the end of February. I put photographs on his website. Thank you for the lovely cushion he received from SOLAR (Stitches of Love and Kindness). Also, thank you to Post Pals for his teddy bear! Thank you to pals who send Lewis and Samuel regular postcards and letters! We even found a letter that had got 'lost' in the house move at the beginning of February from Post Pal Leona so that was a lovely surprise! We have now moved house completely and the bungalow we are in is fantastic! We are just renting so we hope the landlords decide to let us rent it for a long time as we are very happy here!

Lewis has a new carer, Rachel, whom he adores! She is young and pretty and blonde and he absolutely loves her! Samuel is doing really well at school and is approaching his exam time now before going up (fingers crossed!) to Sixth Form in September. He's working really hard and making good grades!

Update 24th February 2009

Sorry for the long wait for an update! We have been very busy moving house! We are now in a fantastic bungalow which is absolutely perfect for Lewis and is huge so is perfect for me and Samuel too! We have a huge garden so Samuel has his trampoline back up and we now have telephone and internet and Sky too so everybody is happy!

We have postponed Lewis surgery - we got a date for end of March - as he has recently had tests for Lyme Disease. You may remember Lewis appeared in The Daily Mail in September 2008. From that article, we had 60+ messages from people suggesting Lyme Disease. A few things have added up (Lew was bitten by an insect in Southern France in September 2005 and started to get ill in December 2005) so The Lewis Jeynes Fund has paid for Lewis to have specialist tests for Lyme Disease and we are awaiting the results. If it did by some miracle turn out that Lew had Lyme, he could be almost completely cured! So having surgery which is irreversible (cutting muscles) is not an option until we are absolutely sure we are ready for that step. We saw the specialist (Dr Daymond) at Nuffield Hospital in Newcastle on 9th February and the results should be back from the tests in 3-4 weeks. Fingers crossed!

Dr Daymond has also suggested that Lewis see a brain specialist in London so we are hoping for an appointment with him soon too.

It’s Lewis' 5th Birthday on Saturday! Wow it has come around fast! It’s a happy time because we didn’t expect him to see his 3rd Birthday, but it is also sad because it means he has been ill for 3 years.

Samuel is doing really really well at school - preparing for his exams! He is doing lots of extra revision lessons and he is feeling really confident so that is great!

And Spring is on the way so we're all feeling great!

Thank you so much to Post Pals for the lovely postcards, cards and letters we have received. Lewis got some valentine cards too - the only ones in this house!! We got two amazing postcards as well - made from material. They have pride of place on display for everybody to see!

Update 11th December 2008

We had a hospital appointment today and I thought it was just a routine one so was totally unprepared. Lewis is going to have to have surgery on his right hip due to the problems with his positioning. He has slight dysplasia and if it continues and is not dealt with now, his hip socket will erode and it will not be fixable. So he has to have something done to the soft tissue around his hip joint (not completely sure what - got an appointment in the New Year to go over details) and he will be in braces and plaster for 6-8 weeks. If this doesn’t work, he will have to have something done to the actual hip joint bone so it was quite a shock.

Other than that, he's been great and he loves getting all his Post Pals letters, cards and presents!

Update 25th November 2008

Lewis is not very well (lots of seizures, twitching and temp spikes) so we're going into the Bluebell Wood Children’s Hospice this afternoon for a few days.

A HUGE thank you to Love Quilts UK for Lewis' wonderful 'transport' quilt which we received yesterday.

Update 7th November 2008

Sorry for the delay in an update. We haven’t had access to the internet until just this week!

In August I separated with Lewis’s dad, and so Lewis, Samuel and I have moved into a new home which isn’t very practical as it is a 3 storey town house with lots of stairs, but we will find somewhere more suitable early next year!

Lewis has been poorly a couple of times since we last did an update. In August he had a severe chest infection and suspected strep infection and was in hospital for a while. He eventually recovered but then got another chest infection in October and was in hospital again for a few days. He's feeling a lot brighter now, although autumn and winter are the time for chest infections and children like Lew are much more vulnerable to these so it’s always a difficult time - lots of staying indoors and keeping warm!

Lewis has been enjoying learning more about his eye computer at school and we have been very lucky to borrow an eye computer for home for 3 months from a charity called Special Effect (www.specialeffect.org.uk). As Lewis learns how to use his eye computer more, he will eventually be able to communicate with us by eye pointing which will be amazing! 

We do still have hope for some kind of miracle and that Lewis will one day get better and be able to walk and talk again, but there has been no breakthrough for Lew, even though we did get lots and lots of feedback from a lot of very kind people after Lewis appeared in an article in the Daily Mail in September. Lots of suggestions were made as to why Lewis is like he is, but sadly all the suggestions had already been explored, or once passed on to Lew's medical team, were not conditions that were relevant to be looked at or further explored.

Thank you very much for Lewis' and Samuel's Halloween packages! They were a lovely surprise! We didn’t get to go out as it was way too cold and Lew had just got over a chest infection. Lew received two books, Crazy Cats which he loves to look at, and a great book about Christmas which has Lewis' name in! We are saving that for December when we get all Christmassy at home! Lew's favourite gift has got to be the Hoob he received! He loves it! Every time he sees it, he has a huge grin! And we now try to catch the TV programme now and then so that our Hoob can watch with us - thank you very much! Thank you for the great Halloween bags for Samuel and Lewis! They were a lovely surprise! We weren’t able to get out trick or treating because of Lew's chest being vulnerable but Samuel got to go out with a friend and her children which he really enjoyed!

Update 4th June 2008

Not much has happened this month. Fingers crossed, Lewis has had a good month and so we've been quite steady and just got on with normal life day to day! 

We have had some visitors over half term which was exciting but tiring for everybody and Samuel had a birthday (thank you so much to all the Post Pals for Samuel's lovely cards and gifts!). 

June and July are much more busy for us - me and Lew are going on a 3 part holiday this month - we are visiting our friend for the weekend, then going to butlins for the week, then visiting Declan K (Post Pal) for the next weekend - so lots and lots to do!

Thank you to all Lewis' Post Pals for his cards, we love to receive them.

Lewis is looking forward to going back to school tomorrow after the half term holiday and then a training day on Monday.

He had an appointment with his surgeon and his PEG is absolutely fine and should last him another couple of years so that’s good news. We are feeling a bit like Lewis has been forgotten by the neurology department though, so we are going to be nagging them for some more tests, as it’s now 2 years since Lewis became ill and we still don’t know what is wrong so we want to see if anything has changed - so I think another MRI is on the cards!

Update 24th March 2008

Thank you to Post Pals for all Lewis' lovely Easter cards!

Especially thank you to Kate W for your letter card, to Karen (Sami) for the lovely bunny card, to Julie Barrett for the funky bunny card, Kate Dee for the squidgy dinosaur card, and to Marie and Michael, and Martin Jackie and Jamie for their lovely surprise Easter cards. 

The cards are on Lewis' dayroom windowsill at the moment, but will go on his Post Pals wall in the playroom soon!

Update 3rd March 2008

Wow what a busy year it has been so far! February was super busy with appointments and visits and of course Lewis' 4th Birthday! Lewis had the most wonderful day and he got so much post from Post Pals arriving from the first week of February. I kept it all hidden away until his birthday so he had a really big surprise! He was quite tired early on his birthday when we opened his cards and gifts but later on he brightened up and had a wonderful time at the local bowling alley with his friends. On Sunday we had his 'proper' party with an entertainer and his puppet called... LEWIS! It was great fun!

Health-wise, Lewis has been doing really well (fingers crossed!) and is absolutely loving school. After Easter he will go to school for 3 days and will also be going on the school bus which will be very exciting for him!

A big thank you to all Lewis' Post Pals who have sent him so many cards, gifts, postcards and letters this month. You certainly have made his birthday very special and there are lots and lots of photos on Lewis' website to prove it!

Update 3rd February 2008

We had a great Christmas although Lewis was ill in November and in December, particularly on Christmas Day and Boxing Day, but fingers crossed so far this year he has been doing really well! His PEG site was infected so he had to have antibiotics for that, and with the infection he did have increased seizures, but once the infection was gone, he was back to normal again.

The most exciting thing about January for us was that Lewis started school! He goes on a Monday and a Friday for around 5 hours and he absolutely loves it! It was very difficult at first to leave him, but its getting easier and he is already signed up to go an extra day from after Easter! He does baking on a Friday at school, and on a Monday he has communications sensory assessment so the school can assess his abilities and preferences and how to help him to communicate. We are so excited that one day soon Lewis might be able to communicate with us in some way by using switching.

We still haven’t been able to get Lewis in his pool (which was donated by Make A Wish Foundation) as the weather has been either too wet or too windy! But Lewis still loves his bath every morning!

We are now preparing for Lewis' 4th birthday! This is a very special time for us as we didn’t think he would have a 3rd birthday, so to be celebrating his 4th is so super for us all!

Thank you very much to Post Pals and posties for all the wonderful Christmas cards and gifts Lewis and Samuel received - too many to count! Thanks also to our regular Post Pals for our post in January. Receiving a postcard, letter, gift or even an email really does make us smile. Lewis recognises his name and so we always show him the envelope when we receive Post Pal post so that he knows it is especially for him! 

Happy New Year to everybody! Let’s hope 2008 can be good to us all.

Update 4th December 2007

November was not a very good month health-wise for Lewis. I knew there was something wrong, I just couldn’t point to what it was, but he wasn’t himself. He was under the weather, not very happy, and generally not well. We made several visits to the assessment unit at the hospital and finally Lewis was admitted with pneumonia, so we spent a week in hospital and then the rest of November at home avoiding people (germs!) and trying to get Lew back to full health.

Lewis’ new bedroom is now complete and he has started sleeping in there properly. His new bath was plumbed in last week so we are still getting used to that, but Lew enjoys it! He has not been able to go in his spa pool from The Make A Wish Foundation, but we hope to when it stops raining, now that he is better!

Thank you to all who have sent us emails and cards. We really do appreciate it very much. Thank you very much to Sami (K) for the get well card for Lewis and also to Despina Ropa for the lovely Christmas card all the way from USA!

Update 31st October 2007

Well it seems that each month we are super busy! This month Lewis had five really big and exciting things happen! First of all we went to an open day at the Bluebell Wood Childrens’ Hospice near Sheffield which will open in Easter 2008. It has been an ongoing project for some time now and it is finally getting to a stage where the families of children who are cared for in the community by the Hospice could go and have a look around. It was a very emotional day, enjoying the atmosphere and the surroundings, but at the same time knowing that we all there because we have a very poorly child. Lewis got to meet some Star Wars characters as well as making eyes at lots of pretty ladies!

Next up was going to London to collect Lewis’ Bravery Award at the Best Wellchild Childrens’ Health Awards 2007. Lewis was presented his award for bravery by Mark Foster, an Olympic and Commonwealth champion swimmer. Lewis loves the water and so to have his award presented by someone who also loves water was very special for us. Lewis was also presented with a special anniversary award to mark the 30^th anniversary of the Wellchild charity, and this was presented to him and the other children by Prince Harry himself! It was amazing to meet with Prince Harry, he was so kind and caring and really interested in the children who had won awards. We got to meet a wonderful young lady called Natalie Robinson who also won a bravery award and who also lives very close to us, so that was very exciting too as Lewis loves young ladies, especially blonde ones!

We had an overnight in a hotel in London and the following day we went to London Zoo! Unfortunately it was very busy, as it was half-term week, but we did get to meet up with Lewis’ aunty Nicola and cousin Evie who live in London, as well as our friend Catriona and her two daughters Tilly and Eliza who also live near London and who we rarely get to see. Most exciting of all, Lewis finally got to meet his buddy Nathan Bovell who is very much like Lewis in his undiagnosed condition, except Nathan was born very poorly and Lewis was fine until he was 2 years old. Again it was a very emotional day with lots of cuddles and kisses and tears, but lots of happiness and smiles too.

Back at home it wasn’t long before we were packing again for our mini holiday in Cleethorpes. As you may recall, in August, we were taken by a charity to Disneyland Paris, but Lewis was so ill and ended up in hospital there. So we decided to try again with a little holiday at a local seaside resort (just one hour away from home) in a caravan. Unfortunately Lewis was again very ill and we had to take him to hospital in Grimsby and then bring him back home to our own local hospital here in Doncaster so that was another holiday cut very short by illness.

Lewis is still not 100%, but for a few days he was very very poorly, and reminded us of December last year when we didn’t know if he would reach his 3^rd birthday. Because of his condition, he can become very ill very quickly, so when he shows small signs of illness we have to think fast to prevent him getting much much worse.

The final exciting thing for Lewis this month has been his sensory room. We have been fundraising to buy Lewis some sensory equipment and it arrived this month so Lew now has a wonderful place to relax and chill, and that has come in very handy this past few days with him being so unwell.

And so today it is Halloween! Lewis is well equipped with his sticky spider web, his glow in the dark skeleton, and his fab spooky Halloween cards from posties Kate Dee and Karen (Sami) Winch. Thank you so much Kate and Karen for your lovely gifts and the cards which are super creative and which will (after Halloween) go on Lewis’ postie wall.

A huge thank you as well goes to Helen B for Lewis’ blue card for his new bedroom. Everybody who has a look at Lew’s new room always has a look at the card and says ‘I wish I could do things like that!’ It is on Lew’s windowsill and will be put in a frame when he finally moves in! At the moment we are waiting for his bath and bed to arrive!

Update 5th October 2007

September was a very busy month for us. We have been catching up on all the activities that were not available during the school holidays, enjoying music and massage and catching up with Lewis' friends. 

We visited a local school and Lewis will hopefully be starting there (just half a day a week) in January. It’s a school for children with physical disabilities and it offers some amazing equipment and experienced staff, so we might even be able to get Lewis communicating with us in some way, because at the moment all he can do is make choices with eye pointing, and smile to let us know he's happy or cry if he's sad. 

The conversion of our garage into a bedroom/bathroom for Lewis is almost complete and we are very excited about it! Lew has been able to choose the paint colour for his walls and he is having blue! Also, his new indoor chair has arrived. He had a giraffe chair which he grew out of as he is growing so fast! So he now has a very cool BLUE triton chair which he loves!

We had results back from his tests taken in July and they were all normal, so we are having a rest from tests for a year or so. Lewis has definitely grown out of his reflex anoxic seizures, which is AMAZING! And (fingers crossed) he hasn’t had an epileptic seizure for almost 2 months! 

We are excited about going to collect Lewis' award later this month for Best Brave Child age 2-3 years, through the Best magazine and Wellchild Charity Children’s Health Awards 2007. We will be getting Lewis a smart outfit to wear to collect his award, I have a feeling his outfit will be blue! It’s his favourite colour at the moment!

Fingers crossed, Lewis' health has been good over the summer except for the odd temperature spikes which come for no reason and go within 24 hours. We are hoping that this winter will be a lot gentler than last year when Lew spent a lot of time in hospital. 

He is such a handsome young man, he's so brave, he has a wonderful smile and we are so proud of him!

Update 31st August 2007

Doesn’t seem like a month since we did the July update! August has been very, very busy!

At the beginning of August we went to Disneyland Resort Paris with a local charity called Bati-About-Kidz. Unfortunately, Lewis was ill and ended up in hospital while we were there so we didn’t get to see much of Disneyland, but thank you very, very much to the charity for taking us.

Our friend Mike ran and completed the Monschau Marathon in Germany on 12^th August and raised lots of money for Lewis’ Fund so that we can purchase sensory equipment and a touch screen computer for him eventually!

Lew’s PEG is doing really well, we’re pretty much used to it now and it’s so much easier to use than his NG tube was! Lew is continuing to grow and we are now awaiting his new indoor chair as he has grown out of his giraffe chair already! We are also waiting for work to start on converting the garage into a bedroom for Lew so that we will no longer need to carry him up and downstairs for bathing and bedtime. We are very excited about the new room as once it is complete we will be able to purchase some sensory equipment with the Fund.

Some exciting news – we approached the Make A Wish Foundation about Lewis having a wish from them and they have (in principle) granted his wish so we are waiting to hear more about that – will let you know when we hear!

And some very, very exciting news – we are 99% sure Lewis has grown out of his reflex anoxic seizures!!! Lewis has been having these since he was around 6 months old – it is an involuntary reaction to pain or fear which would cause Lewis to stop breathing, his heart to stop beating, his brain to flat line for a few seconds. During this time he goes blue and stiff and then very floppy before taking a breath and coming back round. It is very distressing to watch and at one point Lew was having these several times a day (he developed a fear of being laid down on his back). He hasn’t had one for a whole month so fingers crossed they have gone for good!

Later this month Lewis and I had a little holiday in Scarborough (just for one night) and enjoyed visiting the Sea Life Centre, Scarborough Castle, and walking along the promenade enjoying the sights, smells and sounds!

We are looking forward to the schools starting again after the holiday so Lew and I can start going on days out again! During the school holidays, everywhere is so busy that it makes visiting attractions very difficult with a wheelchair, so we are looking forward to getting out and about again!

A quick THANK YOU very much to postie Karen (Sami) for Lew’s giggle stick, wiggly snake and very cool train card! A big hello to Lewis’ two regular posties Sian and Lawse.

Looking forward to September!

Update 1st August 2007

July has been a very busy month for us! We met up with some very good friends for a fantastic Fun Day and Lew had his face painted! I don’t think he was so bothered about the face painting, but he fell in love with the very attractive young lady who was doing the painting and enjoyed the 20 minutes he could gaze into her eyes!!

Lew’s nasal gastric tube decided it didn’t want to stay put and it came out several times this month. It was very frustrating as it is such hard work for Lewis and for me to have to re-pass it, but it was lovely for Lew to have some time without the tube during the day, to have a rest!

Lew had a few big seizures earlier this month, we could tell he was under the weather but could not pinpoint the exact problem. He didn’t have a temperature, but he wasn’t himself and it was clear he wasn’t feeling very well. He has more seizures when he is poorly and he was having on average 2 a day for a few days but thankfully that passed after about a week.

The week before Lewis’ surgery we avoided everybody! We didn’t leave the house very much (which wasn’t difficult with the terrible rain and flooding) but we got very bored not seeing anyone!! We didn’t want Lew to catch a bug just before his surgery though and have to have it postponed!

On Monday 16^th July, Lew was admitted to Sheffield Children’s Hospital for his PEG surgery. The op went really well, Lew came round from the anaesthetic much better than expected and we were able to go home on the Thursday, having done the fast track course on PEG care! Lew looks so much better without the ng tube taped to his face and of course he can breathe much better too because it’s blocking his nose and his throat. 

The stoma did become a little infected so Lewis is now on antibiotics (oral and cream) and it has cleared up very nicely, however it is now over-granulating which is when the skin tries to heal over the stoma site…! So we are awaiting some magic cream to hopefully ‘dry it out’, but if that fails, Lew will have to have it cauterised, but that is a last resort. Feeding and giving meds via the PEG tube is so much easier as well! It’s great! No more ph paper testing! Hooray!

While Lewis was in hospital he also had substantial bloods taken (for various testing) and a rectal biopsy. The results of these tests will take some time to come back as they are rare tests which require specialised culturing, etc. We have already been advised that the conditions that are now being tested for are very rare, are untreatable, and are incurable – but the general medical opinion is that they won’t find out what is wrong with Lew – that he is an enigma!

I found out just last week that Lewis’ dad had nominated Lewis for an award – the WellChild and Best Magazine Children’s Health Awards 2007. I found out because the organisation telephoned me to say that Lewis had won the Award for the Best Brave Child 2-3 years old category! So in October we will (Lew’s health permitting) be going to an awards ceremony in London to collect Lewis’ award!

A friend of ours is running a marathon in Germany to raise money for the Lewis Jeynes Fund on 12^th August, and so I have been given the job of printing his special t-shirt to wear on the day! I have sneaked the Postpals logo and website onto the t-shirt so let’s hope we can get some more post for our pals!

Thank you to pals who sent Lewis Get Well cards while he was in hospital and when he had come home. Thanks to Sian who is a regular Post Pal for Lewis and sends us letters often. Thank you to Post Pal Helen who sent Lew a lovely windmill! Thank you also to Post Pals Sian and Jamie for the fab stickers! Thank you Post Pal Declan for the wonderful glowing monkey! And thank you to Nathan for the bouncy boingy monkey!

Update 5th July 2007

Lew has been stable for most of June, however as we have moved into July he has started to deteriorate noticeably and have more seizures and absences than he has done before. He is not as ill as he was at Christmas, but he seems to be heading that way, so we are hoping that he will be able to fight off whatever it is that is making him ill. He is also struggling with his head control and we are looking at a new car seat as his head flops forward almost constantly now and blocks his airways so I need to pull over and put his head back so that he can breathe again. We have now moved his car seat into the front seat so that I can keep a closer eye on him while I am driving.

On 11^th July, Lew should be in an article in the Daily Mirror in their Health supplement. Do look out for him (and the rest of us!)

On 16^th July Lewis goes in to hospital for a rectal biopsy, blood tests for several very rare genetic conditions, and for a gastrostomy so we can say goodbye to the horrid nasal gastric tube for good (we hope!)

Please do think of Lew while he’s in hospital. We’ll be at Sheffield Childrens Hospital, Western Bank, Sheffield, South Yorkshire, Ward S1.

Thank you so much to fellow PostPal Declan K for the lovely STAR card and the glowing monkey and the totally cool Bob the Builder pyjamas!

Update 11th June 2007

Wow what a wonderful gift Lew received today from you all! It was the best surprise, as I was feeling so miserable because Lew pulled his tube out 4 times in the night and he is on night drip feed so it’s a major panic every time, especially when he just pulls it half out so it’s still going in but who knows where its dripping to - stomach or lungs? We were both soooo tired, fed up, miserable, and the postman said 'oh I've got a parcel for you as well' and Lew watched carefully as I unpacked and... well gorgeous!

It hasn’t got a name yet, but it hasn’t left Lew's side since it arrived. It’s been to taekwondo with us this afternoon (to watch Lewis' friends) and now it’s on Lew's bed next to him so he can see it when he wakes up. 

Thank you so much for making our day very special (again).

Update 6th June 2007

Lew has been stable since our last update. He is still very much enjoying his life to the full; he finds lots to smile and laugh at and enjoys meeting new friends and spending time with old ones! He always has a smile for the ladies, especially young, blonde ones!! We are seeing Lewis’ surgeon on Friday to discuss his forthcoming surgery and we expect a date in the next 3-5 weeks. Lew will have a rectal biopsy and quite a lot of blood taken (for the tests Professor Surtees of GOSH asked to be done) as well as having a fundoplication (putting a band around the top of the stomach to prevent reflux) and a gastrostomy (tube directly into the stomach rather than in his nose and down his throat as it is at present). Lew will really benefit from the gastrostomy and fundoplication as he really doesn’t like having the ng tube and its also very stressful for us as parents as we have the constant worry of it misplacing and there is a serious risk of milk/medicine/water being introduced into the lungs instead of the stomach. It’s a huge worry for us as Lew is on overnight drip feed so to have the tube going directly into his tummy will be a great weight off our minds, and will also mean that Lew will have a clear face, no more horrid plasters, and a clear nose and throat. Perhaps the biopsy and the blood tests will bring us back some results – we will have to see. The major worry we have with the surgery is the general anaesthetic. Lewis doesn’t do well at all under GA and we are very frightened, but it has got to be done so I think we just want it all over with as soon as possible so that we can come out the other side, hopefully all of us unscathed.

At home, we are awaiting building work to convert our garage into a bedroom/bathroom for Lewis as he is growing fast and is very heavy!!! We have some money from fundraising which we will use to buy sensory equipment and a touch screen computer for Lewis’ new room once it is finished.

Lewis should be in the Daily Mirror on 4^th or 11^th July so if you get that newspaper, you can take a look at us all!

Lots of love, hugs and very good health to all our PostPals and thank you to PostPals for Lewis’ fluffy bunny and his gorgeous hug blanket thing!

Update 4th May 2007

Thank you to all our Post Pals who have sent Lewis cards, letters and gifts. We so enjoy receiving them and it really does brighten our days.

Lewis has been stable this past month. We had our long awaited appointment this week at Great Ormond Street Hospital with the world expert paediatric neurologist. Unfortunately he feels there is no treatment for Lewis, but he has commissioned more tests to see if a diagnosis can be found – but he did say that the conditions they are testing for are incurable and do not have any treatment. All the tests can be done through bloods except one, which will require a general anaesthetic, as he needs to have a rectal biopsy to obtain a nerve cell. Apparently nerve cells in the rectum are very similar to those found in the brain and rectal surgery is a lot less risky than brain surgery. So we are waiting for that appointment to come through.

Once Lew has had his surgery, the Professor wants him to go on a 3 month course of maximum dose steroids to try and control his epilepsy. He said there are of course risks involved with large doses of steroids, but that if Lew’s epilepsy does respond to the steroids then they can look at long term treatment with reduced side effects i.e. giving a huge dose once a month.

We are really struggling at the moment with the hopelessness of Lewis’ condition. We are very sad and low, but we are trying so hard to keep positive for Lewis’ sake. We are going to contact the Make a Wish Foundation to see if they can do something really great for Lew because although his body is now almost completely useless, mentally he is totally aware of what is going on.

Please do look at our website which I try to update regularly with our daily activities and lots of photographs.

Update 3rd April 2007

Lewis has been stable for a couple of months now so we got a bit complacent, but this last couple of weeks he has been in hospital twice (once after 999 call for ambulance) as his breathing has deteriorated a lot and he is struggling with the simple action of breathing. We are concerned that this deterioration of his muscles is passing to the muscles around his lungs and this is affecting his ability to breathe. Lew is still ng tube fed and has real trouble with his secretions, so spends a lot of his time choking and coughing. He still smiles occasionally, but not as readily as before, as he really is feeling unwell at the moment.

He has also started to have a new type of seizure which is distressing him a lot as he is aware of what is going on and finds it very frightening, as do we, because it causes his entire body to go rigid, his back arches, and he gulps for breath. Luckily, it only lasts a matter of seconds.

Lew is currently on antibiotics to hopefully prevent any infection spreading to his chest and we await our appointment at Great Ormond Street on 30^th April. In fact it can’t come around quick enough because we really are very worried about how quickly Lew is starting to deteriorate again.

Thank you to Post Pals for your lovely card and gifts. Also, many big thanks to Katie Plant for your letter and your card. I am so sorry we haven’t got around to replying yet but it has just been a bit crazy here recently.

Update 7th March 2007

Lewis’ condition has remained pretty stable these last few weeks. He’s losing small abilities, like he can’t blow kisses anymore or poke his tongue out to be cheeky. His weight is continuing to stay on track and he is soooo heavy now!!! I have muscleman arms!

We have our appointment at Great Ormond Street at the end of next month so things are just trundling along until then really.

Lewis’ seizures have increased recently; he’s been having a lot of absences too, so we are expecting him to have a major seizure in the next couple of weeks – not looking forward to that! Especially as so far after each major seizure, Lewis has lost more ability and to be honest he’s not got much left now. He can smile (and what a smile!) and he can turn his head slightly left and right.

Lewis is still on ng tube feeding and we’re pretty much settled into the routine now.

On 28^th February, Lewis had his 3^rd birthday. Two months ago, we didn’t think Lewis would make it this far, so it was a really very special day for us and we celebrated it in a big way! The house was in chaos, full of people, but it was so great. Lew had a great time but of course was absolutely shattered by the end of the party!

Lewis made an appearance in the local newspaper and then on the local TV news programme and from that we have heard from a charity called Bat-I About Kidz (based in Bradford) who would like to take Lewis (and us too!) to EuroDisney in Paris in August so that’s exciting. We just hope that Lew will be well enough to travel then. They do provide medical assistance and we travel in a ‘jumbulance’ so fingers crossed all will be okay. The hardest thing about not having a diagnosis for Lew is that we don’t know what might happen next. So we literally live each day as it comes and don’t plan ahead. Keeping positive and enjoying every day as much as we can. 

Thank you to all the post pals who sent Lewis lovely birthday cards and letters.  We were so impressed with the home made cards – they were awesome! He had the most wonderful birthday and I will be putting photos from his special day on our website very soon! Lots of love and hugs and cuddles to all our post pal pals xxx

Update 8th February 2007

Lewis’ swallowing had returned somewhat, so we tried him with some stage 1 baby food which he LOVED, but unfortunately there is still a huge risk of aspiration so we have been advised to stop the feeding or to give 1 or 2 very small spoonfuls a couple of times a day. As food has been such an important part of Lewis’ life before he became ill, it is actually more traumatic for him to have just 1-2 spoonfuls than to not have any food at all, so we have decided to wait a month or so and see how his swallowing goes.

Lewis’ dad’s company held their annual dinner in London this week and raised over £4000 for the Bluebell Wood Hospice and for Ward 31 at Doncaster Royal Infirmary, on behalf of Lewis which was awesome!

Lewis’ weight is back to normal after he lost 2kg before Christmas, hence our long stay in hospital. So, the tube feeding is doing wonders and my arms are getting super muscly again from carrying him around!

We are collecting his new (CATO) pushchair/wheelchair on Tuesday so we are very excited about that! At the moment he has a Maclaren Major buggy on loan, but it does not offer anywhere near enough support for him so we’re really looking forward to getting his new, custom-built ‘wheels’!!

I tell everyone I can about Post Pals. It is so awesome and I think more people should know about it! It has brought us so much happiness, just to know that people really do care, people who have never met us, don’t know us, but care enough to want to touch our lives. 

Thank you to Laura (Lawse) for our cards, thank you so much to Helen for our lovely letter (love the paper!) and to Laura for your very touching letter. Thank you so much Jodie for the cassette of nursery rhymes, to Helen for the orange twirly thing (do they have a name?!) and for the cassettes – we particularly love Postman Pat Takes a Message!

Update 21st January 2007

Hello, I wanted to thank everyone for the wonderful presents Lewis and Samuel received over Christmas from Post Pal friends. We have also received some lovely cards and emails too.

As you may know, Lewis was in hospital (with me!) from 29th December to 15th January and so we are still trying to get into a home routine now that Lewis is on ng tube feeding.

I will get around to sending thank you cards to all those who have sent gifts, cards and kind wishes to both Lewis and Samuel, but until I do, I hope everybody will know how much you have made Samuel and Lewis smile these last few weeks.

Update 3rd January 2007

We have made it into 2007! Lew is still in hospital, on IV fluids as he vomited up his feeding tube! We’ve got to see some specialists tomorrow about feeding and will be here for a few more days at least.

Update 21st December 2006

I wanted to say thank you again for all the wonderful Christmas cards Lewis has received, one of our walls is covered in cards and he has loved receiving them. Samuel enjoyed receiving some too.

Lewis had his 3rd MRI yesterday at Sheffield and he didn’t come round from the anaesthetic very well. As a result, we had to stay in last night. Lew has now been allowed home (hooray!) with antibiotics for a chest infection and antibiotic eye drops for an eye infection! He was fine yesterday morning when we went in for his MRI lol!

He is now losing his right hand as well as his left hand which is very worrying. He is also having real problems sleeping as his seizures/twitches are getting much stronger and keep him awake. He is soooo tired love him, he has bags under his eyes, but still he manages to flirt and blow kisses and smile at the ladies!!! He enjoyed making eyes and blowing kisses at two other patients in the ward this morning before we left.

Well we are back home now and we are having a rest before Lew's giraffe chair arrives at 1pm hooray! We hope it will give him the support he needs so that he can hopefully be a bit more independent (ie. not have to sit on our laps all the time).

Merry Christmas to everybody and so many loving and caring thoughts to all who need them.

Update 9th December 2006

Well Lew hasn’t got battens! Phew! That was such a relief, its amazing how much better I feel hearing that news! I was so convinced he had it; I was shocked when they said no he hasn’t! 

The next steps are to test for mitochondrial disease and creatine deficiency as well as awaiting the results of a gene test for dystonia.

We are being referred to Great Ormond Street early next year and Lew will be having a further MRI in January/February.