October 2010

On 3rd October I was lifting Lewis off my bed and he's alot heavier and taller just recently and I misjudged my lifting and slipped forward a little and Lewis' leg got twisted underneath him. He cried alot, so I took him to A&E to get it checked out, he had an x-ray and it was clear - bad sprain, plenty of rest and paracetamol and it will be fine in a few weeks.

So although I didnt send Lewis to school the following week, he did have normal life at home, normal activities, gentle physio, putting his shoes on, lifting, moving, etc.

Then on Monday 11th October I got a letter from A&E asking us to go back as they had reviewed Lewis' x-ray and would like to see him again. So on Tuesday Granny and I took him back to hospital for another x-ray. Well it turns out Lewis did have a fracture on the original x-ray but it was very difficult to see (hairline). He had another x-ray yesterday and there is now a very distinct fracture and so Lewis has a plaster cast on his leg from his toes to the top of his thigh on his right leg.

We have to go back in one week for a further x-ray to see if the break will heal on its own or if it might need manipulation of surgery.

Lewis will be in plaster for around 6 weeks at least, and we are waiting for risk assessments to be done to decide if he can return to school with his plaster on or if he will be safer at home.

Our concern is that Lewis may need bone density testing as we are worried that such a gentle twist has actually broken his tibia so we will be talking to the doctors about that next week.

Sorry it's been so long!

Hello everybody and sorry it's been so long since I last updated Lewis' website! It's been a very busy 6 weeks school holidays! Lewis went to Blackpool with Daddy and Granny and Grandad and his cousins Katy and Emily. He's enjoyed spending lots of time outdoors and has been growing well too ... very tall young man and very heavy for us to lift!

Lewis is back at school now and loving seeing all his school friends again!

Hello everybody and sorry it's been so long since I last updated Lewis' website! It's been a very busy 6 weeks school holidays! Lewis went to Blackpool with Daddy and Granny and Grandad and his cousins Katy and Emily. He's enjoyed spending lots of time outdoors and has been growing well too ... very tall young man and very heavy for us to lift!

Lewis is back at school now and loving seeing all his school friends again!

Local newspaper

Lewis and Mummy and Tina will be in the Doncaster Star tomorrow (Wednesday 7th July 2010) so please do buy it if you can and look out for us!

Hello from Lewis

Just a quick hello and a quick update. Lewis remains on his antibiotics and so far (fingers crossed) his head control has continued to improve and he is well and enjoying the sunshine-ey weather. Lewis continues to enjoy school although he is looking forward to the school holidays as he will be going to Blackpool with Daddy and Granny and Grandad!

Lewis recently spent a very special weekend with Daddy, as his aunty and cousins were visiting from Australia so it was a big Jeynes family get together which Lewis loved!

Please do continue to follow Lewis on Postpals and on Facebook (search for Lewis Jeynes).

Thank you!

Starting again!

Just a quick message to let you all know that today we have re-started Lewis on his therapeutic antibiotic treatment so we hope to see similar improvements to last year but this time without the increased seizures please!

In hospital again :(

Lewis is in hospital again as he is having new movements which are not seizure related but are distressing for Lewis and are exhausting him. He also has a rash which comes and goes which again is distressing him. Doctors are, as usual, clueless as to what could be the problem so at the moment Lew is being observed but we are hoping to get an appointment to see Lewis' infectious diseases consultant soon to see if she has any suggestions for what could be the problem. Very frustrating for us and Lew, but we will not accept that this is 'just one of those thing you have to learn to live with'. We want and need answers!!!

Special Effect Charity and Lewis

Please take a moment to watch this video clip about the Special Effect Charity and the amazing eye computer they are able to loan out to children like Lewis who can only communicate and interract with their eye movements.

Special Effect http://www.specialeffect.org.uk/ is always striving to raise awareness and of course funds to continue their great work. In July 2010, me and my friend Tina are running in the ASICS British 10k London Run for the Special Effect Charity Team to help to raise more funds for the charity ... I will be posting a link to Just Giving when it is set up, so please please please do sponsor us and please do take a look at the Special Effect website via the link above to find out more about what they do!

Thanks!

Tooth Fairy

Just a quick update to let you all know that Lewis lost his bottom two front teeth yesterday! His top two front are wobbly so his smile will just as gorgeous but very gummy soon! :)

Lewis' 6th Birthday!

For his 6th Birthday, Lewis had a Science Boffins Party and it was GREAT fun!

January update

The Lewis Jeynes Fund would like to say a big thank you to SOLACE and Katherine Kerswell, who is President this year, for supporting the Fund at their Annual Dinner which will take place on 3^rd February this year. It is always nice to know that people are reading about our work and taking in some of the troubles Lewis and his friends go through. Don’t forget to look at Lewis’s Facebook Fan Page for daily updates. With the funds we have raised lately we have been able to donate £300.00 to Lewis' school - Heatherwood School for children with special needs. This was a donation in memory of Madison Delaney a school classmate of Lewis’s who got her angel wings just before her 5th birthday in November. We have also purchased a sensory projector for Cameron Key from Stoke. Cameron has severe epilepsy.

If you are a new visitor to this website please do read the archived links to find out more about Lewis our very brave and gorgeous son and those he has helped through raising money through The Lewis Jeynes Fund.

For those of you who dont know already, Lewis was ambulanced into hospital this week with increased seizures. While at the hospital he had to be given strong medications to control his seizures and as a result of this he did stop breathing which was very very scary. The hospital staff at Doncaster Royal Infirmary (Ward 31) were fantastic and responded super fast to make sure that Lewis was okay. It was a terrifying time and we hope he doesnt do it again! Lewis is fine now and back at home.

Snow Day!

No school today for Lewis so we wrapped up warm and went out to build a snowman!!!

Post Christmas update

Lewis has been ill since arriving home from hospital on Christmas Eve, with a stomach bug causing sickness, etc. He has not been able to keep his milk down so has been on fluid replacement and water for the past few days with as much milk as we can manage to squeeze into him without it causing further sickness. He's very weak and not himself at all and his head holding and speech attempts are zero. It's very sad but we are at the moment definitely putting it down to weakness, although the suspension of his antibiotics due to his massively increased seizures cannot have helped at all. Its a very frustrating time .. I think Lewis needs a long holiday in a hot country - this cold weather is no good for him at all :(

Lewis in hospital again

Hello everybody, its almost Christmas ... Santa is preparing for his long journey around the world tomorrow ... and we are just hoping that Lewis will be at home for Santa's visit and not in hospital which is where he is now due to his horrid horrid seizures.

Please please please spare a thought (and a prayer if you can) for Lewis and all the children who will be spending Christmas in hospital this year or who will be ill on Christmas Day.

And please dont forget to visit www.postpals.co.uk. Today Lewis received a Christmas card from JAPAN ... how cool is that?!

Thanks to everybody, again, for all your support and kindness.

December already!

Lewis is back home and alot better although still not 100%. He is off his 2nd antibiotic as we are concerned this may have caused the increased and uncontrollable seizures, we will introduce it slowly in a week or so and see what happens. The sad thing is that the new antibiotic seemed to be having a big effect on Lewis' abilities so hopefully we can find some way around any problems that arise so that Lew can continue to improve without having the horrid seizures which put him in hospital several times in the past month.

On Thursday Lewis was a duck in his school nativity. Lewis clearly enjoyed the experience greatly and it was wonderful for us to be able to go and see him and his school friends in the play.

You can see by the photos that Lewis was loving it!

Lewis back in the classroom after his nativity, giving Mummy a huge smile!

Lewis is receiving lots of cards and gifts in the post already from his massive worldwide fan club - all of this brought about by an amazing charity called Postpals (www.postpals.co.uk) so if you havent already signed up for a pal at Postpals, please do visit the website, find a child you'd like to become a pal for and get writing!

Lewis loves receiving post and always has huge grin when he sees letters and cards arriving with his name on!

Lewis is very excited about Father Christmas coming on December 24th. We have been lucky enough to meet Father Christmas several times already this month already and each time Lew has been mesmerised and listened very intently to what Father Christmas has had to say!

Lewis has promised to continue to be very good and to do his best as always.

Lewis even got a magical message from Father Christmas, all the way from The North Pole which you can watch by clicking here!

Here is Lewis with his Aunty Lucy and his cousins Katie and Emily.

With 2009 almost behind us, we'd like to take this opportunity to thank everybody who has been part of Lewis' life this year, it has been an amazing year with huge ups and downs. Without the support and interest of Lewis' huge network of family, friends and fans (Lewis even has his very own Facebook page!) we would not be where we are now with Lewis on antibiotics which are helping him to improve, even if its just in a small way at the moment. So thank you everybody and let us dare to hope for amazing things for Lewis in 2010 (and for England in the World Cup too!).

Lewis in hospital again

Lewis is back in DRI with greatly increased seizures which are not being controlled by his rescue medication. He is now being tried on phenytoin to break the cycle which we hope will work so we can get back home where all the Christmas lights and decorations are up, but which Lewis hasnt seen yet.

Lewis in hospital

Due to massively increased seizures, Lewis is now in hospital again. Since Monday evening he has been in a seizure cycle with seizures varying from 30 seconds to 3.5 minutes, and recurring every 5-12 minutes. As he has seizures only when he's asleep, as soon as he has settled into sleep, the seizure cycle has started so he's exhausted!!!

Last night he was started on a new drug (chlobazam) for a 3-day trial to see if it can break the cycle. Last night he had 39 seizures with a 2 hour break. This afternoon he fell asleep at 1.45pm and had a seizure at 2pm but has then slept from 2pm until 5pm when I left the hospital as his Daddy has taken over for the weekend. Let's hope this new drug will break the cycle so Lew (and us!) can get some sleep again!

Lewis was, as ever, immensely brave when having his canula inserted! And his flirting skills have not depleted at all ... he was wowing the nurses as usual with his long eyelashes and his gorgeous smile!!!

He will be in hospital for a few more days while they resolve the seizure cycle and discover if the new drug will work for Lew so fingers crossed he'll be home early next week.

Thank you to Postpals for Lew's letters and cards this week :)

Thank you

A huge thank you to Blankies for Babes for Lewis' lovely blanket which he received in the post today. We will be taking some photos and posting them soon : )

http://jaxsonsblankiesforbabes.blogspot.com/

Update

Hello, its been a little while since we updated because there hasnt been much to say! Lewis has been (fingers crossed) doing well with just a couple of seizure clusters that needed treating in hospital, but otherwise he's been happy and well and enjoying life as much as he can!

Thank you to all the Postpals posties who have sent Lew cards and letters and postcards and gifts the past few weeks! He loves to receive mail with his name on!

If you havent already, please do join Lewis' fanpage on Facebook - http://www.facebook.com/pages/Lewis-Jeynes/

And dont forget to get your tickets for his fundraiser at the end of this month!

Update

Today we saw Lewis' neurologist for an update.

There is a meeting of neurologists tonight at which they will discuss Lewis's MRI scans and then let us know the results. The doctors are still trying to decide if the changes in Lewis's cerebellum are an infection which has been and gone or one that is still progressing. The neurologist mentioned that they would have expected to have seen degeneration in his brain because of his 'degenerative neurological condition' (which we found very upsetting as we've never considered this) but we still hope this is a post infection stage and that the changes/damage will stop or has stopped.

A further EEG, new nerve conduction tests and a gag reflex review are being arranged. Its upsetting to think that Doctor's expect Lewis to degenerate further and are not surprised when he does, we still hope we can find something to halt that process and start the road to recovery. Nothing will stop us looking for the answers, Lewis is too brave and gorgeous and deserves to find the cure he needs.

It was also very upsetting for the doctor to say they would do a further MRI in 2 years. All I can see is Lewis' life stretching ahead of him like this, with no hope and no cure. To us 2 years is a lifetime - anything could happen in that time and we've been so hopeful with Lewis' response to antibiotics with his improved head control and cognitive abilities and now with the changes to his MRI we feel like we are taking a huge step back to square one where we know nothing and anything could happen - so it was a very tearful appointment.

We love you Lewis x x x

Walk4Matt 2010 and Hugo Mouse

Lewis has had a good few days and has been super smiley and happy. He's spent some time on his eye computer at home which he loves and I really would encourage you to sponsor this fundraising event to help raise money for the charity that loans Lewis' his eye computer. The computer costs around £20,000 to buy so being able to borrow one is really a massive advantage for children like Lew .. so please do sponsor http://www.walk4matt.org/ and help to raise money for this very worthy cause!

Also, another website we would urge you to visit. Sarah Kidd approached us a little while ago asking if Lewis would like a Hugo Mouse and book. Hugo is a handmade soft toy mouse with his very own embroidered 'special words'. He also has his very own hospital identity bracelet so that he doesnt get lost! The idea of Hugo is to go with a poorly child to the doctors / hospital / everywhere really! to keep the child company and to make the experience less harrowing. Hugo comes complete with a little book of photos of the child with family members and friends so the child can have some familiar faces to look at and also doctors and nurses can interract with the child and Hugo by looking at the book. Lewis loves his Hugo and his little book and Hugo does go pretty much everywhere with Lew. You can find out more about Hugo (and see some photos of Lew!) on Hugo's website http://www.wix.com/hugoshope/Hugo.