Makka pakka cake decorations
Story updated in July 2014
Lewis was born on the 28th February 2004 and everything went really well. Lewis grew and developed normally, although he started sitting up a cake 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 – holding his breath until he turned blue and passed out. He grew out of these by the age of 4. 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 program.
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 now cannot use his hands at all and has to have a special chair to support his entire body and to try and keep his spine and hips in good position to prevent scoliosis and hip displacement. Unfortunately we were a little late finding out that this was so very important so Lewis now has quite severe scoliosis, rib and spine rotation, and hip displaysia. 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. He has since then had many more tests including a very detailed 3-teslar MRI which came back with the same results as usual. Normal.
In 2011, Lewis remained undiagnosed. An MRI scan did show some deterioration in his brain (cerrebular atrophy) which the doctors believed was post-infectious but they didn’t know what infection caused it, or when! They said it looked like what someone would have if they had had chicken pox! More frustration!
Lewis re-started a course of therapeutic antibiotics again in May 2010 as he was on these for 6 months in 2009 and we did see improvements in his head control, he tried to speak, and he tried to reach out for things effectively. 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. We finally discovered that changing his antibiotic was the problem. One of the antibiotics Lewis was taking had raised the levels of anti-epileptic medication in his liver, so when we took him off that antibiotic to start him on another, his levels dropped dramatically!
In 2013 Lewis was admitted to hospital with a severe stomach bug. This resulted in intubation and transfer to ICU. It was discovered his bowel and stomach and abdomen had grown together due to an error in the replacement of his stomach tube in 2010. The tummy bug he had caught allowed the contents of his bowel to be forced through the ‘tunnel’ into his stomach. This required surgery but in Lewis’ weakened state and with a mix up over medications, Lewis ended up remaining in ICU/HDU for six months with collapsed lungs, several episodes of status epilepticus and various infections. His lungs could not cope with all this and in October 2013, Lewis had a tracheostomy tube fitted to allow him to breathe. He also requires a ventilator to assist his breathing. He has 100 degree plus scoliosis and dislocated hips (exacerbated by restricted positioning and not being able to have regular stretches or physio whilst in hospital).
Lewis also suffered a shoulder fracture whilst in ICU due to particularly violent seizures. This has never healed and the bone has dissolved so Lewis is also in constant pain from this.
Finally, on 8 July 2014, Lewis was diagnosed after over 7 years of being undiagnosed. Lewis has Neuronal Ceroid Lypofuscinosis on the KTC07 gene. NCL is also known as Batten Disease. There is no treatment or cure.
Our boy is SO brave. Every single day he deals with unimaginable pain and discomfort and yet still he smiles. 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.
Update 1st January 2017
Like a lot of Post Pals families, there has been a lot of illness here. Not only Lewis, but mummy, daddy, close family members and nurses!
Lewis has been struggling with some very painful issues with his hips, spine, digestive system, his seizures, and coughs and colds. He still smiles and laughs though – they are just a little bit harder to find.
Lewis has had some incredible post in 2016 and now (hopefully) everyone is recovering, we will be able to go through the return addresses and personally thank every one of you.
Now we are in 2017, Lewis has his 13th birthday in February. Lewis’ condition means his life expectancy is 10-12 years old so it’s very worrying for us as we are on borrowed time.
All I can say to you all is how special and precious and truly joyous you have helped to make these years with Lewis and what wonderful and lifelong friends we have made on our journey. Let us hope Lewis can prove the numbers wrong and stay with us this whole year.
Much love to all, especially the amazing young women at Post Pals Central
Update 12th October 2016
Lewis is doing ok at the moment. His seizures are gradually increasing, and his bone/joint pain is intermittent but each time he has a bout of pain, it seems to hurt him more than ever. Heartbreaking to see the pain in his eyes. But despite all that, he still smiles and laughs and his Trachy has developed a small leak (air can pass the tracheostomy tube and pass the vocal cords) which means we get little tiny surprise bursts of sound from him – it’s so amazing to hear his beautiful voice, even if it is just for a split second.
It is Lewis’ step sister’s birthday this weekend so we are looking forward to going to her birthday party. Poppy will be 6!
Our rescue kitten Benjamin is growing fast. And another rescue cat which adopted us last year (Arthur) is recovering from being lost for 4 months and coming home looking like a skeleton cat. Lewis loves having the animals around him, they often make him laugh, especially when they are making a lot of noise!
Lewis is loving receiving postcards and now the weather is colder, we shall be spending more time in his sensory room where all his postcards decorate the walls and ceiling.
Lewis has a lot of toys he cannot play with and so we are going to sort through them gradually and hope to send them to fellow pals.
We have the Alice in wonderland post pals party to look forward to next year as well x
Update 17th August 2016
Hello! It’s always scary to say we are doing fine, but we will be brave and do it! Lewis has been stable for a couple of months now. The odd seizures, but nothing we couldn’t manage at home. The weather has had its moments of being too hot for Lew Lew but it has meant afternoons indoors with the fan and CBeebies so he hasn’t complained! Lewis has received some beautiful post this past couple of months from our wonderful post pal friends – his postcard ceiling in the sensory room is looking amazing!
On 27th August Lewis is having a party arranged as a wish from Rays of Sunshine Charity. We have lots of children as we wanted it to be a party for lots of children so if you are local to Doncaster and would like to pop along, please send a message through Lewis’s Facebook page or through Post Pals website.
With the passing of time, Lewis is getting older, which is scary because it means we are running out of time, but it also means we are putting even more effort in to making amazing memories with him. As Lewis’ classification of NCL/Batten Disease is so rare, he is the only child in the world of his age known to have this mutation so we don’t know what will happen or when. There is one other little boy we know of in India and he is much younger than Lew Lew. He’s also absolutely gorgeous just like Lew Lew!! Every new day with Lewis is a gift for us to treasure.
Love to all our friends who are now like family. Any post received with a return address will eventually be replied to, sorry if it can sometimes be quite a long while!
Update 5th July 2016
What an amazing month June has been. We got to go to two spectacular parties. The first was with Post Pals and I cannot describe how special it was, and what an amazing day we had. We met old and new friends, we met Post Pals we have been communicating with for several years. There was a lot of hugging and a lot of love! The party itself was quite simply the best party ever! We all had such an amazing time – it was truly a day of a lifetime.
Lewis hasn’t been too great over the past few weeks, with seizures and generally being under the weather, but we have carried on taking care of him and doing all we can to make him smile! He always loves receiving post with his name on! Lewis now has a platform outside his bedroom patio doors so that when he is particularly poorly, we can wheel his bed outside on to the platform so he can still enjoy time in the garden and fresh air.
I was clearing out the spare bedroom just this week and I found a big pile of Lewis’ Post Pals postcards, so they are now in the sensory room on display with the rest. Some of them go as far back as 2010, so Lewis and I will be replying to the postcards which had return addresses on. They all look so amazing in Lewis’s sensory room – such a bright and colourful way to decorate the walls and ceiling!
Update 3rd May 2016
Lewis and I have received some lovely post this past few weeks and I have kept my cards out on display – they really do mean so much.
Thank you to Post Pals for the butterfly growing kit. We aren’t ready to start ‘growing’ yet, but will take photos once we do. Lewis also received some super soft toys from Post Pals. Lewis loves puppets so our collection is getting very exciting for our puppet shows to help Lewis laugh! Also he loved his deer blanket cuddly and his wobbly head Fraggle!
A particular thank you from me to Bev for the lovely card which made me chuckle!
Lewis has been unwell quite a lot over the past few weeks, including a hospital admission for uncontrollable seizures. We manage almost all of Lewis’ medical care at home. Sometimes we need some extra help, but since his recent admission plans are now being discussed to be able to give Lewis IV medication at home.
Lewis has been in a great deal of pain with his scoliosis and hip problems so we are trying to balance Lewis’ pain management without losing the essence of Lewis in sedation.
Lewis has very much enjoyed spending time with his new step-sister, Poppy, who is 5. Poppy is busy trying to teach Lewis’ dog, Phoebe, new tricks, which is always fun!
We look forward to seeing everyone at the Post Pals party in June. Poppy will be coming too which will make Lewis very happy.
Update 13th April 2016
Lewis has had a chest infection which needed antibiotics. The antibiotics caused him a very upset tummy which he is just getting over now, a week after finishing the antibiotics.
On top of that, the past few nights Lewis has been having very bad seizures which have now spilled over into the daytime while Lewis is awake (mostly his seizures only come when he’s asleep). Today is a battle to keep him out of hospital as he has had his rescue medication but, so far, it has been ineffective.
Hoping Lewis can fight this and we can stay at home. We have HDU at home so admitting we have to go to hospital is pretty serious for us.
Thank you for all Lewis’ amazing post. We will take time to thank everybody once Lewis is feeling better and things can go a little more back to normal.
Update 16th February 2016
Well January started off really slowly, but now we find ourselves in the second half of February, and almost to Lewis’ 12th Birthday! This is pretty spectacular as when we received his diagnosis of NCL / Batten Disease, they said 11 years old was the expected life expectancy. So to be getting to 12 is something to celebrate! We are having a kind of party in the local Pizza Hut and so far 44 people are coming! (they are all paying for themselves, though!) And we have arranged a surprise visit for Lewis (but, shush, don’t tell him!) of Upsi Daisy and Iggle Piggle from In the Night Garden!
It seems that everyone around us has succumbed to a horrible flu-like cough and cold, so we are trying very hard to avoid getting that in our home. Something like that can be a massive problem, not only for Lewis and trying to keep him away from hospital, but also for myself and his nurses who need to be fully fit 24/7 to look after him properly!
Thankfully, since our last update, Lewis hasn’t had too many seizures (everything crossed, as usual!) and I’m pretty sure he’s having a growth spurt. I’m going to have to sort out his clothes as a lot of them don’t fit his long legs anymore, and some of his t-shirts are just too short! It’s lovely though to know he’s growing, because, of course, that gives us hope that he’s doing well at the moment!
Sadly, just today, our eldest cat passed away. She was almost 17 years old and she died in her sleep. We still have 6 cats left and, of course, our crazy puppy, Phoebe, who was a year old the day before Valentine’s Day! Thank you so much for Lewis’ lovely Valentine cards! He was very much spoilt!
Post Pals cards and gifts have already begun arriving for his birthday at the end of this month, so they have been put safely away until the special day!
We will be taking lots of photos at Lewis’ birthday party, and thanking everybody for your lovely cards and gifts! Could I just ask, people who send Lewis post – please could you put a return address in as we are now more organised here and Lewis is enjoying helping me to reply with personal cards and letters as part of our home education!
Update 3rd January 2016
What a busy December! Lewis had two interactive Post Pals advent calendars to open, from Nanna Lyn and from Grace & Henry, plus a picture advent calendar from Bev, and a WOW advent calendar from Post Pals which we had so much fun with.
Lewis received such lovely elf gifts and we have tried to individually thank everybody for the love and kindness shown to us this Christmas – even I got some gifts which were so lovely and a really precious surprise!
With Lewis, being busy seems to automatically mean being unwell. He has had a bad chest early in December, and then unexplained (so far) temperature spikes and random seizures. He is still unwell but we hope he will start to pick up soon.
We look forward, as always, to warmer weather so we can get out and about more.
Lewis no longer attends school due to his illness so we do educational activities at home as much as possible.
Thank you for another wonderful Post Pals year with Domino (Dottie’s litter pup), the monthly projects, and the wonderful friends we now consider family who we made through post pals.
Update 13th October 2015
Hello. Well, here we are in October. What happened to September? Lewis has been stable since his seizure scare last month. A tweaking of medications has sorted him out for now so hopefully goodbye to nasty seizures for a while. We are now getting settled into our routine together. Since Lewis’ care package reduced from 24/7, Lewis and I now get to spend from midday until 10pm each day on our own. We have fun trying to think of things to do each afternoon, ranging from baking, making cards, painting, watching funny music videos on YouTube, snuggling on the sofa with a family movie, or, if the weather is nice, getting outside with crazy Phoebe puppy in the garden.
Since Lewis’ care package has been reduced, its been a lot more difficult to get out of the house, but a lovely friend who lives right down south near the sea (Dorset) has very kindly donated her daughter’s specialist car seat to us so I can get to take Lewis out on short trips in the car on my own. Can’t wait to get that little bit of freedom back! Before Lewis had his tracheostomy and ventilator, we were always off out and about together!
We have been planning what we will be doing for Hallowe’en, Bonfire Night and, of course, Christmas! We have to plan these things early and then hope that Lewis stays well enough to actually do the things we plan! We are being brave this year and spending Christmas away from home with friends. As you will know by now, we avoid hospital at all costs! All of Lewis’ medical care is done at home. If it’s bad enough to go to hospital, it’s bad.
We have a huge fish pond in our garden which we were able to completely revamp with the help of donations from charities. It is a special sensory pond which Lewis loves. Now the nights are drawing in we get to see the twinkly lights much earlier – a good side of the darker nights coming with winter! In the summer, we put Lewis’ two fish tank fish into the pond to see how they would cope with the bigger pond fish. Well, we are pleased they have grown really fast and are four times the size they were when they went in! They are called Makka and Pakka (after my favourite TV programme, In The Night Garden). We hope they will all survive ok when the really cold weather comes.
We are hoping to be able to go and visit one of our Post Pal friends soon as well, Lewis’ health willing!
Thank you to Lewis’ Post Pals for all the amazing gifts, cards and letters he has received since our last update. Don’t forget, we are decorating the ceiling of Lewis’ sensory room with postcards! Also, if you send post to Lewis, please please put a return address or email in so we can reply. We take a while to reply, but we do get around to it eventually!
Update 24th September 2015
Hello. So the summer is over and we are looking forward to Halloween here now! We are enjoying the latter sunny weather and Lewis is spending a lot of time out in the garden around his sensory pond. We have taken advantage of the shops selling off all their summer garden lighting and ornaments to make Lewis’ sensory pond even more spectacular, and of course because its now getting darker earlier, Lewis can enjoy the lights before bedtime.
Healthwise Lewis is pretty stable. He has had some of his anti epileptic medication increased because of his seizures getting worse at night, and he’s also had the pressures on his ventilator increased to help him breathe better when he’s asleep at night too. As we come into the colder weather though, Lewis’ health is at more risk of deterioration because of the winter bugs like flu and RSV, so we have to start being extra careful with him, especially around people, or in areas where bugs will be flying around! This can make life pretty boring, so we try to do lots of fun activities at home as much as possible without wearing Lewis out.
We are preparing our outfits for Halloween again and we have decided we will be characters from the film Corpse Bride. We love to have trick or treaters visit us on Halloween night (only the treaters though, no tricks please!) and so we decorate the garden to encourage children to visit, and we have the big patio door open and wait patiently with a huge bowl of sweets and treats!
We still do wonder if Lewis will ever have to not have his tracheostomy, but we know that in reality, it has saved his life and that it will not come out as he relies on it too much, more and more as time goes by. So although its horrid and it makes life so very difficult, it means that Lewis is here with us to enjoy and to love. And as always, he still manages to wow us with his gorgeous smile and his amazing laugh (silent laugh because his tracheostomy tube blocks his voice). It is the best thing ever to see his eyes crinkle up and his shoulders shake when he sees something super funny – usually Iggle Piggle and UpsiDaisy sneezing, or Big and Small playing on the swing!
Thank you to the amazing ladies at Post Pals for making it possible for us to reach out to such a wonderful group of people (Post Pals volunteers and friends) and for the wonderful friends we have made on this journey so far. We are often slow at responding to Lewis’ wonderful post, but if you give a return address or email we do get there eventually! Promise!
As you know, Samuel, Lewis’ older brother, is 22 and at university now, but when he was younger he loved being part of Post Pals too as a sibling.
Update 14th August 2015
Thank you this month to Post Pals for the very cute knitted doll! Also, for the lovely cards and gifts Lewis has received. We would like to say a really huge thank you to Teresa and Clive (who we met through Post Pals) and who were able to come and spend the day with us for Lewis’ Naming Day last month.
So many children we know have passed recently and there have been so many funerals. This set me to thinking that people pull out all the stops to attend a funeral, especially that of a child, but they often don’t make the same effort to visit when the person is still alive. I wanted to celebrate Lewis while he is still here and so I came upon the idea of a Naming Day to bring everybody together.
We had a great turn out and it was an amazingly special day with so many memories made. Friends from all over the UK came to the day and made it extra special. Meeting Teresa and another friend we had met online (but never face to face) was so wonderful. I am so happy so many people got to enjoy Lewis’ special day WITH him, rather than everybody coming together for the sad occasion when Lewis leaves us to become an Angel. I would encourage parents of terminally ill children to do this as although it is incredibly emotional, it is a happy day of celebrating. It was wonderful.
Lewis is pretty much stable health wise (everything crossed as I type that!) although his lungs are struggling day to day and we do have difficulties with his SATs (oxygen levels) every evening now. Lewis’ eyes are sore all the time now from straining to see his favourite DVDs and TV programmes, but he still smiles. Sometimes he even treats us with his amazing laugh, which is silent because of his tracheostomy tube, but his shoulders shake and his smile is so huge and his eyes light up!
Lewis’ puppy Phoebe is six months old now and still as cheeky – it is always funny when she tries to lay on Lewis’ lap as she did as a tiny puppy, because now she just doesn’t fit!
Update 23rd July 2015
First of all, thank you for the amazing paper cut framed gifts we received via Post Pals. We were so overwhelmed, they are beautiful and will be treasured forever.
Secondly, thank you for all the lovely cards and letters and of course our regular Dottie newsletter which we love to receive and always know who it’s from by the giveaway paw prints on the envelope!
Lewis is doing ok. He is having a spate of seizures again. With Lewis’ condition, we will never know if this cluster of seizures is ‘the one’ or if this infection of illness or deterioration is ‘the one’. It can make life very stressful indeed which is why we make sure to squeeze every drop out of every day.
Lewis’ puppy, Phoebe, is growing fast and is very, very cheeky! When she was tiny, she used to like sleeping next to Lewis. She is a big girl now and still likes to sleep next to Lewis but is a little bit too big now so it’s quite funny to watch her trying!
This weekend Lewis is having a naming day. This is like a christening but is non religious. The reason behind this is that we wanted to bring as many people together as we could to celebrate Lewis so that he can enjoy them too. As you know, Lewis’ illness is terminal and so one day everybody will get together to say goodbye. I wanted all those people to get together for a happy time so we have friends giving readings and we hope it will be an extra special day. In true Lewis style, though, he’s starting to get ill!! I hope so much that he is fine for Saturday as we have guests from as fat apart as Scotland and Taunton! It will be busy and the preparation is really stressful but we hope it will all be worth it and that Lewis will have an extra special day.
Lewis’ brother Samuel has been home from university for the summer but is going back at the beginning of August to do his Masters. It’s been lovely to have him home and we will miss him loads when he heads off again.
Thank you again to all Lewis’ post pals in UK and overseas. We do try to get around to sending personal replies in the post if you give a return address or email, but sometimes it takes a few weeks!
Happy summer to everybody!
Update 7th June 2015
Lewis has another chest infection and so is on antibiotics again, but otherwise he is feeling quite well and is very smiley and happy!
He is enjoying the sunshine and has had some surprise visitors this month (May) already, particularly Jan and family from Taunton in Somerset, and our very own Post Pal Leona who is all the way from Scotland! It was amazing to meet Leona after all these years of her being a regular Post Pal for Lewis! A very overwhelming and emotional day!
We are really looking forward to coming to the Post Pals Party at the end of this month!
Update 30th April 2015
Lewis has 24/7 care by qualified carers but due to illness, maternity leave, going off to college/university and childcare issues, Lewis’ care package collapsed in March. Since then it has been very stressful as Lewis’ medical/clinical needs are way too much for one person (in other words, me, his mum). For a few weeks we had emergency cover by agency nurses and finally in mid April we started with a new care agency called Thornbury. This means we have been having a qualified nurse and an unqualified (training) healthcare assistant doing 12 hour shifts around the clock. Consequently, the house is always full and busy with training and teaching new people Lewis’ routines and needs, and both Lewis and I are getting used to having these new people around.
In addition, we finally gave in and got a puppy! She is called Phoebe and she is now 10.5 weeks old and absolutely gorgeous! An absolute bundle of madness and we love her completely! She is brilliant around Lewis, and completely crazy around everybody else until she collapses on the floor in a heap from exhaustion!
To coincide with the new care agency starting, Lewis also got a very bad chest infection. He has been on antibiotics for 2+ weeks now and is still quite poorly with it. He is also having seizures and very high temperatures – all infection related – so we are doing our best to keep him as well as possible while he recovers. We did manage to get out to the cinema recently to see Disney’s Home and he really enjoyed it!
Lewis has had some lovely Post Pals post but we haven’t had chance to take photos of him with it yet to put on his Facebook page. If you have sent Lewis post, we will get around to it, I absolutely promise! And if you leave your return address in the envelope or email, we will also get around to a personal thank you at some point. We make lots of plans to do activities with Lewis but often his poor health prevents this from happening.
Yesterday, Lewis got a visit from the SpecialEffect Charity Team to introduce him to a new, super high-tech eye computer to play games on! They already loan Lewis an eye computer for communications but this new one really is amazing! I expect Lewis will be able to use it sooner than we will learn as he is very quick at picking up the programmes on his eye computer! Now that a new kind of funding has been made available by the government for eye gaze equipment for disabled children, we hope soon to be able to give the charity their equipment back so they can loan it to some other much deserving children!
In July I will be running the Vitality British 10k for the Batten Disease Family Association so I will at some point be begging for sponsorship from all of Lewis’ friends and supporters! Details will be available on Lewis’ facebook in the next few weeks (and then probably every single day after that!).
Update 3rd March 2015
Hello. This past month has been very busy, not least because it was Lewis’ 11th Birthday!
Earlier this month we helped to film a video for the Department of Health about what it is like living with a diagnosis of a rare disease. The video was launched on Lewis’ birthday, which is also World Rare Disease Day! I did mention Post Pals in the interview, but they didn’t keep that part in the final cut, unfortunately. You can watch the video on YouTube
Lewis had to go on a strong course of antibiotics earlier this month because his neck wound had got infected. The good news is that the neck wound is looking better although it is still very large and causes him a lot of pain and discomfort, especially at tape change time which happens every day after his bath. He’s so brave!
We’ve also been interviewing some new potential carers for Lewis’ at home care package, as he does have a 24/7 waking fully trained care requirement. The girls who look after Lewis do 12 hour shifts every single day/night and are amazing. We are so lucky to have such wonderful people in Lewis’ life.
And of course we come to Lewis’ birthday! We were overwhelmed by the amount of Post Pals post Lewis has received for his birthday! There was so much post, we did open a lot of his presents on his actual birthday, but two days later we still have a pile of unopened packages! We have been so busy, we haven’t got around to them yet, but we will, and the photos will be on his facebook page very soon!
He had a wonderful day and not one but FOUR birthday cakes! This morning he had a slice of Gruffalo cake blended in with his porridge. Lewis has blended porridge and fruit every morning for breakfast via his feeding tube into his tummy, then he has a healthy lunch of meat, vegetables and potatoes, pasta or rice, and then some fruit later on. He eats very well, considering he is nil by mouth!
As you may know, Lewis’ medical professionals have suggested that due to his illness, he has a life expectancy of 11 years, so you can imagine this birthday was extra special for us. Let’s all hope and pray that Lewis defies the odds and has many more birthdays after this one!
Love and hugs to all Lewis’ wonderful supporters old and new and as yet undiscovered!
Update 31st January 2015
Not long since our last update and nothing much has changed. I have signed up to do the British 10k in London on behalf of the Batten Disease Family Association. I did the same run in 2010 for the charity SpecialEffect. I think I have only just recovered from that run in time for this one five years later!
Lewis is doing ok. He is very noisy with his breathing and seems to struggle a lot, but his oxygen saturations are good so we aren’t sure what is wrong. We have changed his diet to try and put some weight on him as he is only 22kg, so he’s getting a lot of calorie dense foods at the moment to try and bulk him up a bit. He cannot cope with large volumes so we are having to find foods with lots of calories in a small volume. It is a task!
We are currently getting quotes to have Lewis’ bedroom window changed into a patio door as he has a new charity funded sensory garden pond but it is difficult to get him out into it so we will have direct access from his bedroom which will be particularly important when he becomes too ill to really leave his bedroom.
Lewis has had some wonderful post from Post Pals, particularly recently. We do cherish every letter, postcard and gift, and everything has a place. We do try to remember to put photos on Lewis’ facebook page of all his posts so please do remember to check often.
We saw Lewis’ neurologist recently who has given us permission to give Lewis high dose oral rescue medication at home if he starts having seizures again so this will hopefully greatly reduce our need to take him into hospital.
We are very much looking forward to Lewis’ birthday at the end of February. We have The Gruffalo theme going on and are looking forward to lots of Gruffalo type games on the day! We are going to try REALLY hard to come to the Post Pals Summer Party this year as well!
Lots of love to all Lewis’ friends and supporters!
Update 18th January 2015
I’m really sorry, we don’t seem to have updated for quite some time!
Lewis has Batten Disease. The illness we were twice told he didnt have, even though he showed all signs – well finally through a special micro-DNA study, they found a faulty gene which Lewis got from us (mum and dad) which is a new form of (neuronal ceroid lipofuscinosis) Batten Disease which wasn’t diagnosed before because nobody had seen it before.
It has been a difficult journey coming to terms with this, that Lewis has a terminal illness which has a life expectancy of around 11 years.
Lewis has also been quite poorly over the past couple of months, he sleeps alot and is easily sick so he has lost weight. He now weighs 22kg, but he keeps getting taller, so he is quite skinny!
We do still manage to get smiles from Lewis, but he is in constant, chronic pain with scoliosis, kyphosis, discolated hips, unhealed shoulder fracture, pressure sore in the creases of his neck, and other things we probably even don’t know about. On Boxing Day his broviac line dislodged due to tissue granulation, so for a period of time we were not allowed to leave the house or give Lewis a bath because of the infection risk. It has now been removed so we can leave the house again, and Lewis can have a bath!! However it means we don’t have IV access anymore. Luckily, Lewis’ neurologist has agreed that we can give him an oral dose of his epilepsy rescue medication at home so we no longer have to take Lewis into Resus via ambulance if he goes into seizure clusters. The oral dose will take longer to work than the IV dose but will have the same effect overall (to stop the seizures) and it means we can stay home.
Our aim is to keep Lewis out of hospital and to keep him as well as we can for as long as we can so we can enjoy spending time with him and making precious memories.
As we have had such difficulty taking Lewis away from home for any period of time, the Pilgrimage did fall a little flat, but we have been making up for this by using the Fund to buy things Lewis can enjoy at home.
Lewis still loves to receive Post Pals post and continues to recognise his name on his post, although his eyesight is starting to deteriorate slightly. We continue to post Lewis’ photos on his facebook page and tag Post Pals as much as we can.
We have received some amazing post for Lewis and we are now endeavouring to return post if we have return addresses – we are good at the writing and drawing, but just not so good at the actual getting to the post office part! Bear with us!
We are now planning Lewis’ 11th Birthday party for the end of February. It is going to be small and simple, but all Post Pal buddies are welcome to come and visit Lew Lew at anytime, just let us know and we can make plans!
Thank you again for all your amazing support.
Update 18th October 2014
Lewis is doing well. We had a great surprise recently when Lewis was nominated for and won the Outstanding Bravery Award at the Yorkshire Children Bravery Awards 2014 in Leeds. Lewis got to meet the actual real life Chuckle Brothers which was massively exciting as we have loved watching them for many years!
Lewis’ neck wound is healing well so we will soon be ready for him to go into hospital for his broviac surgery. His broviac line will be removed and replaced with a port-a-cath. Lewis requires this direct IV access as he is very difficult to cannulate and requires IV medications in an extreme emergency situation (if he needs IV medications, it has to be immediately).
We have had a couple of practice trips for Lewis’ Pilgrimage and we are getting ready for our first proper trip to Taunton in Somerset next month. Then in December we will be heading to Southampton to meet some Post Pals friends! Very exciting indeed!
Lewis has received some lovely post this month and we feel very privileged to have made such amazing friends.
Update 29th August 2014
Since we received Lewis’ diagnosis of NCL on KTCD7, we have gone into overdrive fundraising to fulfil some wishes for Lewis. We cant go far with Lewis and we cant do much, so we are planning a trip around the UK to visit his Post Pal friends! The fundraising has been a huge success and we will be starting our visits next month if all goes to plan! We look forward to meeting as many Post Pals people as we can. Lewis wasn’t well enough to come to the Post Pals Party, but we have taken lots of precautions and plan to travel in a special vehicle which is extra comfortable for Lewis, with lots of supplies!
Lewis has received such lovely post this past couple of months. As usual we have taken photographs and put them all on his facebook page. Lewis always loves receiving post, and he recognises the Lewis J on the letters and postcards and parcels!!
There is no plan to take Lewis back to school as he is too poorly and because the time we have left with him is very limited, so we are going to try and make as many memories as we can while we can.
Post Pals has been amazing for us. I remember the first post we received – two huge parcels from the Post Pals Christmas Elves! We haven’t looked back – the friends we have made, the amazing children we have learned about, and the family we have got that we didn’t have all those years ago. Our Post Pals family.
Update 9th July 2014
Yesterday we finally received a diagnosis for Lewis’ condition and that he has defective gene KCT07 which he got from mummy and daddy. It’s incredibly rare for two people to have the same gene problem and meet and have a child. The diagnosis came from the second stage of the DDD study which is a study where the DNA is micro-analysed and this takes several years as you can imagine.
At the moment we are simply in shock.
The condition is progressive and degenerative with no cure, treatment or recovery. It is a distant cousin of Batten Disease which will explain why this kept cropping up in connection with Lewis’ deterioration.
Very little is known about the condition as it is so rare.
We hope (as always with the help of amazing Post Pals buddies) to give Lewis happiness every single day that we are luckily enough to have him with us.
He also had a recent scoliosis appointment and his curve is 100 degrees plus and therefore inoperable.
Our beautiful little boy still manages to smile despite being in constant and considerable pain.
Update 12th May 2014
Hello everybody. Thank you all for the lovely post Lewis has received from Post Pals. We continue to post photos and thank you comments on Lewis’ facebook page and we hope you get to see them. I keep putting particular pieces of post aside to respond to personally by post, and the pile is getting larger all the time! I promise I will get organised!
This past week I have just been able to start caring for Lewis by myself which is a major achievement for me after 5 months of feeling terrified of the responsibility. Lewis has been so smiley and happy and he really is enjoying life at the moment. He is loving watching his DVDs in his new sensory room, having his books read to him, and listening to music. He loves his Post Pals post, especially the post cards which we are going to use to decorate the ceiling with in his sensory room so that when he is lying on the sensory carpet, he can look up at see all his post!
We really feel like we are getting organised here now. Lewis’ trampoline has been sunk into the ground so that he can now go on it easily as it is at ground level. We have had some decking put in the garden so he can sit out comfortably in his wheelchair, and we are also in the process of making a corner of the garden his very own sensory garden!
Lewis still remains undiagnosed but (everything crossed!) his seizures seem to be finally under control again. His shoulder and hip are still sore but we have agreed no surgery this year if we can help it. He also needs extensive spinal surgery for his scolio-kyphosis as well but all his doctors and we his parents agree that the best place for Lewis this year is at home, with no hospital! So we are trying very hard to achieve this!
This weekend we are taking an extra special trip to London to Hamleys for an extra special party for 60 children from all over the UK which is being hosted by the Strongbones Childrens Charity. We have got to dress up as pirates and princesses! We are hoping the trip will go smoothly – it is a practice run for the Post Pals summer party on 28th June as we hope to be able to come to that too!
Lots of love to everybody on Post Pals. Thank you so much for everything and we hope to keep bringing you positive and happy news.
Update 5th February 2014
Happy New Year everybody! Well we have managed to stay at home, although Lewis has had several hospital visits in an ambulance because since we came home from Sheffield Children’s Hospital, he’s had a lot of seizures. Lewis’s neurologist has now started him on a new anti epileptic medication called Phenytoin which is what they were using in hospital as a rescue medication. We hope this works as there isn’t much left to help with his seizures if this new medicine doesn’t work.
Lewis has been so much brighter and happier and we have been getting lots of smiles. He has even laughed, but we can’t hear his laughter sounds anymore because of his tracheostomy. He is gaining weight well – such a difference from the skin and bone he became last summer. He is getting used to his trachy now and his tummy and bowel seem to be settling down as well which is really great news as he has had problems since April 2013, just before his admission to hospital for that long 6 months.
Lewis has lots of care at the moment as it is difficult for me (mum) to cope with all his new requirements on my own. His carers have been absolutely amazing and almost part of the family, which is lucky since they are here 24 hours a day at the moment!
We still have no diagnosis for Lewis. The doctors now say Lewis has ‘undiagnosed neurological degeneration with epileptic type seizures and movement disorder’. We will continue to search for a diagnosis for Lewis, try and discover what turned him from a normal little 3 year old boy into a child who can’t move or speak or eat.
Lewis will be going back to school for a couple of hours in the next few weeks and then the plan is to re-integrate Lewis into school gradually after the Easter holidays. He is really excited about going back to school, but he gets very tired at the moment and all his new medical requirements have to be sorted before he can go back. He will go back to school with a one-to-one carer who is fully trained to care for him.
Lewis really needs hip and spine surgery this year but his doctors have agreed that he needs to have a good period of recovery after long hospital admission, so we are going to try and put it all off until next year if we can.
Lewis has loved receiving all his amazing Post Pals post while we were in Sheffield Children’s Hospital, and also since we have come home. He was thrilled with his amazing Elf gifts! Thank you! It has been difficult for me to thank everybody personally because I had a bit of a breakdown when we finally got home from hospital so I’ve not been well myself, but once I am back on track, I will try to thank everybody personally for the amazing support, gifts, cards, letters and love Lewis and I have received over the past months.
Update 26th November 2013
Lewis has been in HDU at Sheffield children’s hospital (after various trips back and forth to ICU) for over 5 months now. The Post Pals cards and letters and postcards he has received have been great for decorating his bed space.
Well, everything crossed, this coming Monday we will be packing everything away ready to finally leave hospital and go to Bluebell Wood Children’s Hospice until Friday when we will finally go home!
We are very excited but as Lewis has been this close to discharge on numerous occasions, we won’t celebrate until we are settled in and have definitely left HDU for good! Well, at least until next year!
Update 26th October 2013
I had my first tracheostomy change on Thursday. It needs changing every week. The tapes that hold it in place need changing every evening. At the moment it is quite a big hole in my neck but as it heals up the hole will get smaller. The skin on my face, which was getting very sore from the mask I was wearing, is now much better.
I am still having very powerful and uncomfortable spasms in my right shoulder which I have now had Botox for – hopefully this will start to work in the next few days.
My left hip has now become dislocated and will require surgery (I had the same surgery on my right hip last year).
I am on antibiotics for a UTI again so I will be having my kidneys checked at some point to make sure they are functioning ok.
Everybody who needs to be trained in how to care for me with my tracheostomy is coming in to learn all the new ways to care for me as I will now have to be cared for only by a person who has had tracheostomy training. Once everyone is happy and comfortable caring for me, I will be allowed to start going home and should be home properly before Christmas.
Mummy has planned an extra special Christmas for us to celebrate!
Update 24th October 2013
Lewis has now had his tracheostomy and we are learning how to care for him with this new thing.
He’s doing really well and is really bright and happy. He’s really loving his Post Pals post and we are decorating his bed space as much as we can to make it nice for him.
We hope to be able to go home before Christmas.
Update 14th October 2013
Today we had Lewis’ MDT meeting (all professionals involved in Lewis’ care) and we expected to be discussing being discharged at some point this week. Instead we will be here for another 4-6 weeks as Lewis will be having surgery early next week to give him a tracheotomy. This is necessary because attempts to wean Lewis off the NIV have failed and we really want to get Lewis out of hospital and back home.
A bit of a shock, very scary, but Lewis is a hero and we love him so very much.
Update 3rd October 2013
Lewis is still in critical care at Sheffield children’s hospital but is doing really well. We were due to go on home leave for 48 hours this week but Lewis has managed to get a chest infection and as he is now on non invasive ventilation for his weakened lungs (from prolonged and numerous intubations on ICU). So because he now also needs oxygen, he needs to stay in hospital until he has kicked this bug!
It’s been a very long slog in hospital and we are really looking forward to going home but better to be properly well before we take that big step.
Lewis has managed to get out to the park across the road before he got the infection, so he has seen a bit of the outside world! We miss our cats and fish!
As we have been in hospital all summer, we intend to make the most of the rest of the year so will be celebrating Halloween, bonfire night and Christmas in great style!
Thank you to everybody who has sent Lewis cards, postcards, letters and gifts. We really appreciate it all and do try to take photos and do thank yous on his Facebook page.
Update 31st August 2013
Lewis has now been in hospital for 10 weeks, most of them in ICU at sheffield children’s hospital. There have been a few problems. The first two were severe stomach problems combined with very low levels in his blood. The blood became the priority and so the choices were bone marrow aspiration to check function, or temporarily stopping Lewis’ anti epileptic medication as a side effect of this is decreased bone marrow function. Lewis has been on the same AED for 6 years, but they suggested the stomach problems may have triggered this new reaction.
Less than a week into reducing the AED, Lewis went into status epilepticus (constantly having seizures) so was intubated and transferred from Doncaster to Sheffield by the amazing Embrace transport team. While on ICU, we discovered what was causing Lewis’ stomach problems. When his PEG was replaced with a new one in 2010, his bowel had moved between his abdomen and stomach so the new PEG was inserted through the bowel and remained there for 3 years without anyone knowing. During this time, Lewis PEG sore was always very sore and infected and unbeknown to us, a tunnel was forming, connecting Lewis bowel and stomach together and his bowel had also become stuck to his abdomen wall.
Lewis had already lost a lot of weight (approximately a third of his body weight) through his recent stomach problems, and so it was agreed he was not strong enough for the major laparotomy surgery required so the surgeons decided to try the surgery laparoscopically (using cameras instead of a large incision). The surgery was successful – they unstuck the bowel from the abdomen, sealed up the infected peg site and put in a new peg. They decided to leave the tunnel and hope it healed itself. Unfortunately the tunnel has not healed so Lewis will be fed into his jejunum (entrance to intestines) for 3 months and when he is stronger, he will have the laparotomy to sew up the holes.
So that was sorted out, fits had calmed down, AED was re-started, and we were coming home. Then Lewis suffered a collapsed lung so went back into ICU.
Since then, Lewis has had problems with collapsed lungs and been intubated and vented several times. He has also gone into status epilepticus again after an antibiotic for a urine infection had a nasty side effect of dropping his AED levels to zero. That was 2 weeks ago.
On Tuesday, Lewis had his ventilator tube removed and he went on to non invasive ventilation (NIV) but only lasted half an hour before requiring re-intubating. Yesterday they tried again and he is now on NIV and doing ok although he has another urine infection and is on (different) antibiotics, but the infection is causing him to have a lot of fits so for now we are still in intensive care.
Lewis has been through so much and has been so immensely brave. He has loved getting post pals cards, letters, postcards and gifts and we have been decorating his bed space with them all. We have been overwhelmed by how loving and caring people have been.
We hope to be able to start talking about home again in the next 2-3 weeks if we don’t have any more setbacks.
Update 21st August 2013
Well it’s been a tough few days for mummy and daddy and I. My EEG on Monday showed I’m in non convulsive status which means I’m having fits all the time. I moved back into ICU to be ventilated and am now on very strong sedation. A couple of not very nice options have been discussed to try and control my seizures but at the moment we are hoping my anti epileptic drug (which has been recently introduced) will soon take effect and so no fiercer intervention will be required.
So at the moment I’m asleep most of the time. I’m still having breakthrough seizure type movements but only when I am awake so I’m in a dark and quiet room and everybody has to whisper!
Tomorrow I’m going to theatre to have a broviac line (which is a permanent-ish type of canular) and I’m also having my jej PEG replaced with a jej mickey button.
Update 30th July 20013
As Lewis seizures are not being controlled in critical care HDU ward, the decision has been made to increase the sedation to a level where Lewis will be unconscious. As this may in itself cause respiratory problems, we are moving back next door to critical care ICU ward. This is being done for 24-48 hours with a 24-36 hour post sedation recovery plan so the neurologists and medics can come up with a reason for the increased seizures (infection?) and a plan for their future control. Until then we are reading a fabulous book Lewis has received from Post Pals but I’m sorry I can’t remember exactly who it’s from as we are quite disorganised at the moment, but thank you! Whoever sent it!
Update 29th July 2013
Lewis’ lung has started to reinflate and he is breathing by himself. He is in HDU due to seizures though.
Lewis has had so much Post Pals post (thank you!) but because he’s not stopped fitting, we haven’t had chance to do photos. But we will!!! In particular Lewis loved Grace’s jokes and Henry’s footprints, and Julie and Alexander’s book about Jake the pirate. Thank you to Harriet for the beautiful pillowcase and Clare and Jessie for the bunting. So many more cards and gifts and we will get to them when things are a little less tense!
Update 27th July 2013
Yesterday Lewis was moved back to PICU. He has made it through the night, though his left lung is still partly collapsed. Physio came last night and loosened the gunk inside the lung which is stopping it being fully inflated. He is having physio again this morning to clear more. Lewis is sedated and his breathing is being undertaken by a ventilator but he’s doing better than last night and they hope to X-ray again this morning and show his left side is doing better and may be partly inflated now. Keep strong for him everybody, he’s fighting back and won’t let this get to him. Our brave soldier.
Update 19th July 2013
Lewis has woken up today. During an X-ray and CT scan of his abdomen this afternoon they discovered a problem with his PEG and he will require surgery early next week. This is in addition to his other problems. He is doing well now off the ventilator but is needing suction and oxygen often.
Update 17th July 2013
Lewis is in Sheffield PICU after spending three weeks in Doncaster Children’s Hospital. The doctors couldn’t discover what was wrong with him (he’s been having severe stomach problems for 8 weeks now) and during this time his blood levels have dropped very low so he was admitted. The doctors decided that either Lewis’ already undiagnosed degenerative condition had worsened and was now affecting his internal organs or that he was having an adverse reaction to his anti epileptic medication and so they decided to stop his medication and see if the bloods dropped.
Yesterday he fitted constantly and so after following usual hospital protocol, Lewis was intubated and sedated and transferred to Sheffield PICU. He hasn’t woken up yet but we are hoping he will soon. He is being very well looked after and Mummy and Daddy (and big bro Samuel) are taking turns staying at his bedside for when he wakes up.
Update 1st June 2013
Lewis is currently in hospital with an unexplained abdominal problem. He started with a poorly tummy last week and has since got increasingly worse and is now being closely monitored as his condition is deteriorating. We were hoping he was on the mend yesterday but today he’s a lot worse and will be in hospital for a little while longer.
Update 5th May 2013
Well Lewis has been on new medication for his overnight screaming, since we discovered they are a new type of seizure. It has taken almost 18 months for this to be sorted out – 18 months of him not sleeping, screaming for hours every night, being exhausted all day. Finally the doctors agreed to an overnight EEG and so now we are trying a new anti seizure drug. So far so good but it is difficult trying to get the balance right… too much and he’s too sleepy in the daytime, not enough and the screaming comes back. We have an appointment with the neurologist later this month to discuss long term treatment, and another overnight EEG is booked for June.
Lewis has been enjoying school a lot more now he’s not tired all the time, he’s much more chatty and bright during the day, and he’s sleeping so much better – we aren’t used to all this sleep!
We went to see Lewis’ private doctor in London in April and as a result some new tests have been done and we are trying some new foods and supplements. Every little thing helps. We will not give up searching for some answers for Lewis as long as the doctors are unable to give us any idea why he got ill and is now like he is.
This weekend Lewis and I went to visit his big brother Samuel at university for the day. Samuel is doing really well and we are so proud of him. He will be 20 next week so he really is Lewis’ BIG bro!
We are looking forward to spending a lot more time outdoors now the weather is getting nicer. Lewis has enjoyed watching me tidying the garden and helping out a little bit in his own special way. Lewis is very sensitive to the sun so he can’t go out in it without lots of sun cream or he gets very sore indeed so it is usually only for a short time, or we spend a lot of time in the shade. But Lewis does love to be outdoors, and we play with bubbles and other messy things, lots of which he receives from his lovely friends at Post Pals.
Update 7th April 2013
What a busy couple of months! Lots and lots of appointments to try and discover why Lewis has been unable to sleep, including a 24 hour overnight EEG which tested Lewis’ brain activity during sleep so we could see what was happening to make him wake up screaming several times a night. Well it turns out Lewis is having a new kind of epileptic seizure and he is having a lot more than we were even noticing. The doctors think he was probably having only 30-90 minutes of decent sleep per night. No wonder he was so tired and unhappy. Well we are really pleased to say that so far (everything crossed!) the new medicine Lewis is trying has helped to control these new seizures and he’s having a lot less so he’s getting a lot more sleep and is getting back to his usual smiley, chatty, happy self with his big beaming smile!
Lewis has had a lovely Easter holiday so far, spending time with family and friends and receiving lots of Post Pals post which he continues to love! Looking forward to some sunshine so we can get outside in the garden a bit more as we are all very fed up with snow now!
Update 3rd February 2013
What a busy month January has been! Lewis has had real problems sleeping. He’s been having sporadic sleep issues for around 14 months but this January he has been struggling to sleep at night at all, and so has been very sleepy during the day and not happy at all. We have spoken to his medical team about this before, but as it has escalated quite alarmingly this month, we have asked for an emergency appointment to discuss some kind of sleep study to see if we can get to the bottom of the unexplained screaming out in the night, often for several hours at a time.
Lewis has received some wonderful post this month, cards and postcards and letters and some great DVDs. He absolutely adores watching films as this is really one of the only activities, alongside reading, that he can participate actively in. Watching and listening are his only abilities. He enjoyed watching Mummy trying to drink milk through the crazy straws he received from Post Pals recently! And he did laugh whilst watching Open Season 1, 2 and 3 which were also from one of his Post Pal friends, Grace.
So it has been a tough month with little sleep and not many smiles, and we didn’t even get to make a snowman as it was far too cold to go outside! But we enjoyed looking at everyone else’s on the internet!
We are looking forward to some finer weather soon and also Lewis’ birthday is later this month, can’t believe he will be 9! It is always difficult at birthdays because we are another year further into him being ill, and another year with no idea why he is ill like he is, no explanation, no cause, and no hope of a diagnosis, but we try not to give up as one day someone might be able to help Lewis to get better.
Lewis’ scars are healing well after his hip surgery. We need to speak to the surgeon about it though because he is getting a sore patch of skin from pressure which was not there before the surgery. In fact, when he is sat on my knee, his bone is very hard and digs in so it must be very uncomfortable for him too.
We will keep trying to make Lewis’ life as happy and comfortable as possible, and we have to say that having so many Post Pals friends has been an absolute life saver for us and for Lewis. Knowing people care and want to take the time to write a little note or send a card or a gift to our gorgeous little boy, it is just wonderful. And Lewis ADORES receiving Post Pals post! It is the first thing we do when he gets in from school, before anything else!
Happy February everybody! Love from Lewis and family x
Update 4th January 2013
Happy New Year everybody! Lewis had a split Christmas this year as he spent it with Daddy, so he will be having a second Christmas at home with me and his big brother Samuel at the weekend, so thank you to all the Post Pals who sent Lewis Christmas gifts, especially his two elves – we will be taking photos and doing proper thank yous once he’s opened all his gifts. Lewis also received lots of lovely Christmas cards, and almost a full set from the reindeers! The Reindeer cards were wonderful and Lewis really enjoyed listening to their antics in the letters they wrote him.
Lewis has been out of his horrible plaster for several weeks now and is coping a lot better. His scars are healing nicely and his hip position seems to be good, although the surgery and the plaster for 9 weeks has caused his scoliosis to get a lot worse. We have an appointment with the consultant next week to see how bad it has got. It is giving him a lot of pain at bedtime, being laid flat, so we will need to talk to the consultant about this too as Lewis is not sleeping well at night anyway, and this is making it worse for him.
Lewis’ results came back from the micro-array study which took almost a year to carry out. Scientists looked very closely at his DNA to check for any abnormalities – it takes so long as the DNA is very tiny and there is a lot of it! The results were that there were no abnormalities at all, so they are now putting Lewis’ DNA into a further study which will take slightly longer which then micro micro analyses Lewis’ DNA to see if they can find anything that way. Other than that, there are no new tests on the horizon and so we still have no idea what made Lewis ill, or what continues to keep him ill.
On a positive note, Lewis is really enjoying life at present, and is often smiling and happy, and occasionally will laugh at his favourite films or TV programmes. At the moment he is loving Open Season 2 and Open Season 3 and Happy Feet 2, but his favourite favourite at the moment is RIO which we have in 3D so its extra special for him to watch!
Lewis does love to receive post from Post Pals and we do keep everything that is sent. A lot of his pictures and cards are on display in and around his room and the house and it is always an absolute joy to know that people from all over the world are thinking and care about our gorgeous Lew Lew, so thank you very much indeed.
Update 27th November 2012
Hello and thank you everybody for Lewis’ wonderful postcards, cards, letters and gifts over the past couple of months.
Lewis is now out of plaster and finding it very strange after 9 weeks of being laid almost flat on his back with his legs sticking out to the sides! He is quite skinny and a bit spotty so lots of massage and cream is needed. Its also very uncomfortable for him and he has two rather long wounds, but they are healing very nicely. He is still in a lot of pain when moved, but is settled now when in a good position and is enjoying being back at school half days at the moment. He has loved receiving his cards and letters and gifts from Post Pals and we treasure them all! Everything is kept!
So now we are just waiting for Christmas and for big brother Samuel to come home from university for a few weeks to visit us. We would like a rest from hospital until next year so Lewis’ next appointment is at the scoliosis clinic in January. Having his hips in plaster has not helped his scoliosis at all and we are very worried that it has worsened quite considerably, but we will find out soon enough, so will try to put it out of our mind for now.
Since Lewis has been improving after his pelvis/hip surgery, he has been quite ‘chatty’ which has been lovely and we’ve had quite a few smiles, especially when reading letters and books or watching DVDs from Post Pals. It is so lovely to receive post from over the seas, so lovely to know that people very far away are thinking about our gorgeous Lew Lew, but also extra special to receive Post Pals post from people just around the corner! Thank you again! And we hope you have a wonderful Christmas – we will, as usual, do our best to make sure Lewis has the best Christmas he can!
Update 25th September 2012
Well its been a very stressful few weeks! The weeks leading up to Lewis’ hip surgery were worrying as it was all so scary and major, especially when we went for the pre-op appointment and found out just how major his surgery would be! But before then, he got to go to Blackpool for a week with Daddy and Granny and Grandad and he had lots of fun there!
So on 7th September we turned up at the hospital for Lewis’ operation and he was first down on the list to go to theatre. Four and a half hours later they paged us to say he was in recovery and we rushed up to see him. Since Lewis became disabled around the age of 3, his positioning has been a problem and he has developed quite severe scoliosis. This, alongside difficulty with supporting his upper body effectively, has caused his right hip to slowly come out of place and his pelvic bones have grown incorrectly because of this. This meant that Lewis’ right hip was basically totally displaced and there was no simple way to put it back. So the surgeons decided to break Lewis’ pelvis, shorten his right thigh bone as this had also grown longer due to the hip being out, and to use a plate and screws to put his hip back into a better position. All this was done to hopefully help Lewis’ positioning and also to ease pain which it was starting to cause him.
When we saw Lewis, he had a canular into his neck (he doesn’t like giving up his veins to needles!) and was on oxygen, and had masses of blue plaster cast round his waist, down both legs, all the way to his toes. He will be in this until at least 22nd November when we will go back to hospital for an x-ray to see if the surgery has worked and that the thigh bone has re-set and the pelvis is safe.
Lewis was in hospital for 12 days after his surgery because he got a couple of infections requiring IV antibiotics, as well as needing a blood transfusion due to losing a lot of blood during surgery. It was quite worrying for the first week as Lewis was asleep most of the time, very pale and not very responsive, but as the blood transfusion kicked in, along with the antibiotics starting to take effect, he started to brighten up which was really great news and we were finally allowed to come home.
Now we are at home, Lewis is fighting off a tummy bug and a chest infection. It isn’t helped by the fact that his plaster is set in such a way that he is laid almost flat, and of course it is very difficult to move him about with his huge hip spica on. Even the OTs and physios on the ward were surprised about how large his plaster is! He only just fits through an average doorway! So Lewis is spending a lot of time watching TV and having stories read to him in bed! He has received a lovely parcel from Post Pals which made him smile, and some lovely Get Well cards and postcards too. He also received some lovely cards and gifts whilst in hospital and we put photos of these on his facebook page to share with everybody.
So now we are hoping Lewis’ general health will improve, that his surgery will be a success, and that after 22nd November he will be out of plaster and ready to go back to school as he is really missing all his friends!
Update 12th March 2012
Sorry it’s been so very long since the last update. I’m afraid the winter blues set in and the computer hasn’t got much attention at all. Lewis was ill most of November/December/January and is only just really starting to pick up. There was nothing specific that was wrong, but he was very unhappy and generally under the weather. We had several hospital visits to try and pinpoint the problem, and a few visits to the GP as well, as Lewis was unable to sleep at night, waking and crying for hours, with no apparent cause, and with no way to console him. So we’ve all been very very tired.
Everything crossed, things seem to be picking up and he’s becoming a lot brighter, and just this week starting to sleep through the night again, almost the whole night anyway!
Christmas was difficult as he was very ill on Christmas Day so although he had so many presents from Post Pals, he was too exhausted and unhappy to really open many and it really took it out of him when we managed to open a few, so we decided to open them with him gradually over the next few days. He got some wonderful cards and presents from Post Pals posties as well as an extra special card from each of Father Christmas’ reindeers! These will now become annual Christmas decorations!
Lewis had to have some more bloods taken in January as the bloods sent off from Liverpool to test for Battens Disease were sent to the wrong lab so they couldn’t be done. The poor doctor at Sheffield who tried getting blood from Lew had a real struggle and after 1.5 hours only managed 3mls! He sent them off anyway and we got the results back a couple of weeks ago – negative! So here we are again at square one – no idea why Lewis is ill or what his diagnosis is! But it was great news to have it confirmed that he definitely does NOT have Battens Disease.
In February Lewis had his 8th Birthday! Again, he got lots of lovely cards and presents from Post Pals and as he was feeling MUCH better, he really enjoyed opening these and still has many of them up in his bedroom. He has finally moved into his ‘new’ bedroom and we are fast getting used to it being much easier to manage, and Lewis LOVES having a TV on the wall! He’s also got all his reading books on shelves in his new room so its much easier to choose a bedtime story!
Now the weather is improving, we are trying to get out and about as much as possible as Lewis really loves the fresh air! Sadly, in the winter months, we tend to avoid people because of coughs and colds and bugs which Lewis picks up very quickly and which do tend to knock him back quite severely, so we love the warmer weather and being outdoors!
Thanks to Sian and Jamie for the wonderful gifts and cards and thank you to Teresa Murray for the lovely gifts and cards which always make us smile.
Update 16th November 2011
Well, Lewis did indeed have his brain biopsy in September this year, which was a very scary time for all of us as we had left it until the very last and had many many other tests done first that weren’t so invasive or risky. Of course to the neurosurgeons, its a daily thing, but for us it was major and to be honest I think if we’d known how huge the scar would be on Lewis’ head, we might have thought about it a bit more! But it was definitely necessary as we had run out of ideas and we are determined to continue to try and find out what has caused Lewis’ illness as we do believe the miracle might happen where he can get better. As long as he is completely undiagnosed, there is hope.
We did have a fright when Lewis came home after the surgery. We were in the car for 2.5 hours for the drive from Liverpool back to Doncaster, and when we arrived home we noticed that Lewis’ head had swelled up A LOT and was squishy down the side of his wound! We panicked, an ambulance was called, and we were rushed to hospital. Well… panic over… Alder Hey were telephoned and advised us that it was completely normal and would drain over a few days! Which it did, phew!
So after a few more days off to recover properly, Lewis was very very happy to go back to school. He had definitely missed all his friends and teachers, as he had been off school since July when the summer holidays started. So we then had the wait for any results of the biopsy. At the time, the surgeon did say they had noticed that the arachnid membrane which covers the brain just inside the skull was abnormal so that was giving them something to look at, as well as investigations of his actual brain tissue (both white and grey matter) and his brain fluids.
Apart from a bunch of seizures and a ‘Frankenstein’ head (just in time for Halloween!) Lewis has recovered really well and is back to his normal happy self. He still loves receiving post from his Post Pals friends, and was very very excited to receive a package of goodies all the way from Madagascar! He also had great fun with his Halloween package from Post Pals, and continues to enjoy hearing about Dottie the Dalmatian.
Yesterday we returned to Alder Hey for the results of Lewis’ biopsy and we really didn’t expect much. Lewis had his wound checked by the surgeon who was very happy with its healing, and he had an EEG as well, he wasn’t bothered about having his head covered in electrodes as Cbeebies was on the TV!
Our final appointment was with the neurologist and we are still in shock really from what she told us. They have noticed in Lewis’ brain cells some pigment which is highly suggestive of Late Infantile Batten Disease. Now you may remember Lewis was tested for this 5 years ago (almost to the day) and the results were negative. But as this particular pigment in the cells is such a big marker for this condition, they have taken bloods to send to Guys Hospital in London (where the UK specialist on Batten Disease is based) to check Lewis’ lymphocytes. Apparently this is a new and conclusive test and will give a definite result. Although Lewis does not display a lot of typical Batten symptoms, there is a lot about him that is typical. So we now have to wait 4 weeks to get the results of that. It’s going to be very difficult and we are all very very upset and we really had hoped never to hear that word again in relation to Lewis. However, we will hope and pray that like all the other tests, this one will also come back negative.
In the meantime, we shall continue to enjoy spending time with Lewis (perhaps a little bit more than usual if that’s possible!) and work very hard to make this Christmas very special for him.
Thank you, as always, to everyone who sends Lewis cards, letters, postcards, and gifts. He really does love to receive his post and we do keep everything.
Update 2nd August 2011
Lewis is enjoying the school holidays and being able to visit lots of fun places with his new friend Lucy who is doing some work experience caring for Lew before she goes back to university in September.
Lewis is still awaiting a further appointment at Alder Hey hospital in Liverpool to discuss his brain biopsy. We have heard from the consultant and are just waiting for the appointment letter to arrive – very scary!
Lewis’ antibiotic treatment has almost finished now after more than a year. He did at some point have some bacteria in his blood caused by a bite from an infected tick, but all that bacteria is now gone from his system so we are slowly reducing the antibiotics and will be stopping them completely soon. We hope that this will not cause Lewis to return to having severe chest infections again. We will see when the colder weather comes.
Lewis is now wearing glasses as he is very slightly short sighted. What we have found is that when watching TV, if he doesn’t wear his glasses, then his eyes water, so we make sure to remember now!
We have been using a new sleep system for about a month now and are hoping to see some great improvements soon in his spine and ribcage situation. At the moment he has severe scoliosis and a rotated ribcage causing one of his shoulders to ‘hump’ and his ribs on one side to stick out. He’s basically all twisty. But we are hoping that with the sleep system and with good overall positioning, we will be able to prevent or at least put off for a very long time any spinal surgery, and at the same time hopefully resolve his hip displacement problem too which has been caused by his twisty spine.
Lew’s general health (everything crossed as usual!) is good and he’s definitely enjoying the sunshine! People comment on his lovely colour, but I point out to them that it is only on the bits that show! He’s got a very white belly and back!
We have noticed that Lewis is very very smiley and happy most of the time nowadays, which we see has a really good sign. Also, his head control is continuing to improve, and he’s started making a lot more sounds, so we do make a massive effort to have ‘chats’ with him. Whilst life with Lewis is physically very hard work, and emotionally very difficult at times (with worrying about the future and his health), he is always an absolute joy to spend time with and we love him so much, and knowing that his Post Pals friends care about him too is just amazing.
Thank you to Post Pals and to everyone who sends Lewis post. He does love to receive it, we keep everything, and we keep extra special items out on display so we can look at them often.
Thank you to Sian and Jamie for the fantastic home-made photo book about their rabbit called Milo which has been made specifically for Lewis. Thank you to Holly for the crafty bits and the hand puppet making kit.
Update 14th June 2011
Lewis continues to do really well on his blended vegetables diet! So far he is having butternut squash, sweet potatoes and carrots! Apples next! All this is through his PEG (tube) as he cannot have any food/liquid in his mouth.
Lewis is growing very fast, lots of people comment on his long eyelashes, but now they are also commenting on his length even though he’s always in a wheelchair! He’s not been able to go in his stander recently as unfortunately he fell off his bed and broke his leg AGAIN! So he had a plaster cast on for three weeks but had that removed today.
Lewis has had lots of hospital appointments recently as we are trying to get lots of testing done to continue to try and find out what has made him ill. We have been invited to take part in a genetic study and we hope that this will give us some answers although it does take up to one year to carry out the testing so it will be a while before we hear anything.
Lewis is, as ever, very happy to be receiving post from Post Pals! He has received today two letters from schoolchildren in Switzerland! He loved having these read to him, and looking at the colourful stickers on the letters.
Unfortunately Lewis will not be able to come to the Post Pals party this year as he is unable to travel far anymore. We travel for important hospital appointments (in London and in Liverpool) but these distance appointments do take their toll and make him ill. Although we know he would love to see everyone at the Post Pals party, we also know that the distance travelling and the need to stay somewhere overnight would really upset his delicate constitution, resulting in increased fitting, and digestive shutdown, and no smiles which is always really sad!
Thank you so much as always to everybody who sends Lewis cards and letters and gifts. Lewis loves getting mail from Dottie and we always read the letters and show the postcards to Domino!
Update 13th April 2011
Lewis has been back to Alder Hey for the results of his MRI and they have come back normal as usual! He also had some bloods taken for various, very rare conditions, also all normal. We are now waiting to arrange either an angiogram and then a brain biopsy, or to just go straight in for the brain biopsy. We should hear from the hospital in the next few weeks about that.
We are also starting Lewis on a blenderised diet, which basically means we will wean him off the formula milk he has through his PEG and he will instead have real, healthy nutritional food, through his PEG which has been blended to a liquid consistency. It’s quite daunting but will definitely be worth it for the health benefits!
Lewis also had another test for Lyme Disease which has also come back as negative which suggests that either his original positive test was a false-positive, or that the long-term use of antibiotics has eradicated the disease from his system. Whichever, the doctors have advised that we now start to reduce Lewis’ antibiotic intake which is good, but also a bit scary as he has been on them for such a long time!
Lewis has lost both his top front teeth and his new ones are growing through, but there isn’t enough room! So we are waiting for a dental appointment to see what can be sorted out so he doesn’t end up all crooked!
Lewis continues to be a super smiley and happy young man who is always wanting to see what the postman has brought for us! He loves it when the post has his name on so thank you to all the fabulous Post Pals out there who send Lewis postcards, letters, cards and gifts! I cant remember if I thanked one particular Post Pal last month but massive THANK YOU to Sian and Jamie (who have been sending post to Lewis for 3+ years now) for the donation to Lewis’ Fund!
Looking forward to the summer now so we can spend lots of time in the garden with the cats and the chickens!
Update 2nd March 2011
February was Lewis’ birthday month and what a busy month it has been!! He’s had ALOT of hospital appointments as the doctor in Liverpool (Alder Hey) was true to her word and is trying lots of new things to see if we can find a diagnosis finally for Lewis. So we’ve been flitting between Doncaster hospital, Sheffield Children’s hospital, and Alder Hey hospital in Liverpool.
Since our horrible appointment at the scoliosis clinic we’ve seen some improvements already in Lewis’ posture as we’ve starting to be much more focussed on his positioning in his seat, in bed, and with his new Charleywrap from New Zealand. We are determined to prove to the doctor we saw who said ‘nothing can be done, just wait until it gets so bad he needs surgery’ that positioning and posture management can and will help to maintain Lewis’ spine and extend the time he has before surgery does become necessary.
On 22nd February Lewis had an appointment with a specialist optician who prescribed him with glasses for very mild short sightedness so that’s a trip for the weekend to get some glasses! On 23rd February Lewis had his general anaesthetic at Alder Hey for his MRI, blood tests and lumbar puncture. Unfortunately they couldn’t get the needle in the correct position for the lumbar puncture so we’ll have to go back again for this another time. We will get the results from the other tests over the next few weeks. The list of things being tested for is quite long but is on Lewis’ facebook page. On 24th February Lewis had his check up at Doncaster about his broken (but not fixed) leg and the x-ray showed that all was fine so that’s a relief!
On a sad note, Lewis’ kitten (Tig) who would be a year old on 17th March has gone missing. Tig was definitely Lewis’ kitten out of all our cats as he would always sit with Lewis, whether in his chair or on his bed, and they had a special bond. Tig has been missing since 11th February. Yesterday we gave in and went to the RSPCA to get a new cat who is 4 years old and is called Mannie and has settled in already!!
The end of February was of course Lewis’ 7th Birthday! He received lots of cards from Post Pals which I saved for his big day. Unfortunately, on his actual birthday, he was ill in the morning so missed out on spending his birthday at school, but Mummy and Granny made up for that at home! In the afternoon he had a small tea party with TWO birthday cakes, some singing and dancing and lots of fun! Thank you very much to all the Post Pals who sent Lewis a card, and thank you also for the gifts he received, especially his Disney DVD! He has received some fantastic hand made cards and we do keep them ALL! We are running out of space to display them in Lewis’ small bedroom but when he moves room after the adaptations have been done (hoist, special bath, etc) we will have more room and will have a ‘Post Pals Wall’ like we used to have before we moved house in 2008.
Update 1st February 2011
Lewis received lots of cards and letters and gifts in December from his Post Pal friends and Elves, but as he was spending Christmas with his Dad, we saved them until he came home on 3rd January when Lewis had his second Christmas!!! He loved opening his gifts so thank you everybody who sent Lewis a gift or a card or a letter… he really enjoyed opening them and we are making good use of everything he received! In January Lewis received a scrapbook kit from Post Pals which we will be filling up over the next month or two!
Lewis has, fingers crossed, been well most of the time apart from un-explained temperatures which is usual for this time of year. We’ve managed to keep at bay any chest infections so far and are hopeful we can survive this winter without a hospital visit (please don’t let that be famous last words!).
Lewis is seeing a new doctor now at the Alder Hey Hospital in Liverpool. As a result of seeing this new doctor, Lewis is now in the process of undergoing several new tests. He’s already had a very detailed eye examination involving having sensors on his head and face, and looking at flashing lights and a computer screen with moving squares. It made my eyes go funny as Lew was sat on my lap for the 30 minute test! Lewis will be going under anaesthetic again at the end of this month for another MRI (a very detailed extra powerful one) and at the same time will have extensive bloods taken for more tests as well as a lumbar puncture for more testing of his spinal fluid and DNA. The doctor in Liverpool is VERY hopeful that she can find some answer for Lewis. She said that because Lewis was completely fine until he was past his second birthday (i.e. was not born with a condition) it should be possible to discover what caused him to become ill and (we wish and hope and pray!) to find some way of making Lewis better! There is talk of a brain biopsy if the MRI scan shows anything that needs further investigation and we have discussed this and will agree to this surgery if we believe it could lead to some improvement with Lewis’ condition.
Lewis continues to be his happy and bubbly self and we are seeing very tiny improvements in him, which although they are really tiny, are so amazing for us to see! He is getting brilliant at being able to move his head about for a short while, lifting it off his chest when it falls forward, turning his head to look to either side of him – amazing! And he smiles most of the time now which is really fun especially because he has lost one of his top front teeth so I call him Gummy Bear sometimes! In the past couple of weeks we’ve even experienced Lewis’ laughter once or twice which really is magical!
The best thing (I think) about the improvements in Lewis just recently is that other people who don’t know him well are starting to see him! Usually, people will see Lewis in his wheelchair and assume he has cerebral palsy and is not mentally responsive either. But with his exceptional eye tracking and responsive facial expressions, people are now seeing the Lewis inside who understands and wants to interact with people! He may not be able to move his body but his brain, his personality, is very intact!
So lots of hope for us here at the moment and everything crossed!
Update 15th December 2010
As usual it’s very busy here!! Lewis is stable which is great for this time of year – often we would be in and out of hospital but FINGERS CROSSED he’s doing okay! He has however been to hospital quite a lot for appointments. As you know, he broke his leg in October so had to have a lot of time off school as it was very difficult to transport/manual handle him. He had his plaster off in mid-November and is now plaster-free, hooray! He has had some intensive physio to try and sort out any niggles and is doing a lot better!
We have an appointment in January to see the orthopaedic team about his hip placement and his spine (scoliosis) but in the meantime we found out about a family in New Zealand who have made their very own version of a back/spine brace which is much friendlier than the NHS versions available here. We have put our order in to get one and hope to receive it early next year – we have had approval from Lewis’ physios to try this.
Lewis was very very happy to be back at school but then the snow arrived!! We could not leave the house for three whole days because of the extent of the snow (18 inches in some parts of our garden and drive and even out on the road!). School was closed for a little bit longer because of the ice, but thankfully Lew is now back at school and this week he was a shepherd in his nativity. He loved it! The photographs are on his facebook page for everyone to see.
Today we had a very exciting appointment at the Alder Hey hospital in Liverpool. Lewis saw a paediatric neurologist we had been recommended and she was fantastic! She was so positive and really confident about new tests and really getting to the bottom of why Lewis is ill. She feels that it is just a matter of finding the right tests so that we can finally get some answers and she’s determined to get us there if she can! So Lewis will be having another (super duper very high powered) MRI in the next couple of months which will show up any changes in his brain that might not have been picked up before. She also wants to take some more bloods to test for other conditions, particularly metabolic illnesses, as well as doing a further lumbar puncture to test the DNA from his spinal fluid for various illnesses she has in mind. She has also spoken to the neurosurgeons at Alder Hey about the possibility of a brain biopsy for Lewis – now this is very scary for all of us, but the place in the brain they want to take the biopsy from is a very easy part to get to (for a brain surgeon!!) so once Lewis has had the MRI, we will decide whether or not to go ahead with this – the reason for doing this would be that the results might lead us towards a treatment programme that could see some real improvements in Lewis’ condition and that is something we would love to see and what we are always hoping for, so we are definitely leaning towards having this done.
Lewis is very excited about Christmas, we have the tree up and the decorations and lights are sparkling all over the house! Lewis will be going to spend Christmas with his Daddy and grandparents on Christmas Eve but will be back home with Mummy just after the New Year for a second Christmas with Mummy, Shane and big brother Samuel. Thank you everybody who has sent Lewis Christmas cards, thank you to the reindeers (4 so far!) for sending Lewis letters about what is going on with Father Christmas and his preparations for the big day, and thank you to pals who have sent Lewis Christmas gifts!
A wonderful December to everybody and let us hope that for us and all other children in need of answers that 2011 is the year we get our wishes!
Update 12th October 2010
I can’t believe it has been three months since my last update! It’s been so very busy here!
Lewis is growing very fast, is becoming very tall and heavy, spending lots of time in his stander at home and continuing to practice holding his head up! Unfortunately, because he is getting so heavy, I did slip and drop him while trying to lift him off the bed about a week ago, and so we had to go to A&E to get an X-ray on Lewis’ foot to check it wasn’t broken! Luckily, it was just badly sprained, but it is hurting Lew and so he has been off school for a week, but we hope he’ll be happy enough to return on Monday.
Lewis will be changing bedroom soon (hopefully by Christmas!) as we live in a private rented bungalow and our landlord has just agreed to a 5 year tenancy so we can get some adaptations done! Lewis is swapping bedrooms with his big brother Samuel so that he can have his bath and bed and other equipment all in one room complete with ceiling tracks and a hoist! So that is exciting! Luckily, all the items Lewis received from a charity via Post Pals for his ‘In The Night Garden’ room makeover can be moved to his new room once it is finished! We are also hoping to get accepted by a charity that does ‘sensory gardens’ as Lewis loves being outdoors and we know he would love his own little sensory garden at home.
Lewis got his Lyme Disease test results back from the hospital in America and again they were negative so it is now time for us to put that behind us and look to other reasons why Lewis became ill when he was 2 years old. We continue to hope that we will find a cure for him and that one day he will be able to walk and talk and eat again.
Lewis has received lots of lovely post from Post Pals and I always try to take photos and put these on his facebook page and tag in Post Pals so everybody can see him! Most recently he got a very cool smiley face wrist band (bracelets are for girls!) which he was very happy to wear and it looked very cool as it matched the t-shirt he had on!! Lewis is looking forward to Halloween and we will be hollowing out a pumpkin to make a Jack O Lantern and will hope for some trick or treaters to visit (but only for treats please!). Lewis loves to meet people, especially other children, so children in fancy dress is the ultimate enjoyment for him!
Lewis now has just two kittens (Patrick and Tigger) who are huge and they love to sit with him on his chair or bed and keep him company. Unfortunately, April died in the summer, and we were so sad but then we heard about another little kitten who had nowhere to live and as she was a little girl, we couldn’t resist, so now we have Aoife too and although she is tiny, she thinks she is as big as the boys (who are 4 months older than her!) and they have such fun together. Aoife’s favourite place to sleep is with Lewis and he loves her – she always makes him smile!
Lewis has another ‘pet’ now too… Domino the Dalmatian! Domino was sent to Lewis by Post Pals and we receive regular updates from Domino’s family who have all gone to live with the Post Pals children!
Things in the future for Lewis are a microarray analysis – this is very intensive testing of Lewis’ DNA which takes around 9 months to complete (all it takes from Lew is some blood I believe). The waiting list for the testing is around 2 years, but the results so far for children who have had the test have been positive – several children with totally undiagnosed conditions have finally been given a diagnosis. If we can get a diagnosis for Lewis’ condition, we can then look at a cure or if not at least have an answer. We are also awaiting an appointment for a SPECT scan which I think is like an MRI scan except its a video rather than a photo… so it shows where signals/blood/fluid, etc are going in the brain. That might give us some answers too! We are always looking in new directions to try and find some help for Lewis and are always open to suggestions – a lot of tests Lew has had have been as a result of people suggesting doctors/conditions because who knows? One day we might find the right one!
I’ll try not to leave Lewis’ update so long until next time! Apparently as I type, it is 77 days until Christmas! Help! Thanks again to everybody for taking time to contact Lewis, to send emails, postcards, letters, cards and gifts! Lewis always recognises his Post Pals post and always has a huge smile!
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 30th 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 3rd 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 12th 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 16th 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 12th 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 11th 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 16th 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 4th or 11th 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 30th 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 28th February, Lewis had his 3rd 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.
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