2009 Update

It is still January and yet so much has happened already!

In September last year an article appeared in the Daily Mail about Lewis and we had a huge response. Many of you mentioned Lyme Disease but as we had been told Lewis had been tested for this, we did not pursue it further. But some of you did - and we are now looking forward to an appointment next month at the Nuffield Hospital in Newcastle to get Lewis a detailed test for Lyme in the hope that he does indeed have this (from an insect bite he got in Southern France in September 2005) and that with a long term course of strong antiobiotics, he can be cured.

Now we dont know if Lew has it yet, so we cant be too excited, but we are very very hopeful and we are immensely grateful to everyone who continued to tell us to get Lew tested for Lyme, even after we had put it aside as something he had been tested for and therefore didnt have.

This is, we are sure you can imagine, immense news. And we will of course let you know the outcome of our appointment on 9th February. The test results take several weeks to come back but we will let you know how the appointment went anyway and then we can all hope and pray for some good news from the results in a few weeks time.

Lewis has, so far, been incredibly well this winter for which we are truly grateful. Many people have commented on how well he is looking. We are so proud of him and of his big brother Samuel.

Some more good news for us is that Lewis, Samuel and I will be moving very soon to a bungalow - at the moment we are in a house with lots of stairs so this is going to be a great improvement for us. Also, the bungalow is much larger than this house so there will be plenty of room for all of Lewis equipment and we hope to have his sensory bedroom up and running very soon after we move in!

Thank you to everybody for all the lovely Christmas cards and gifts for both Samuel and Lewis. They both had a really lovely time.

We are still awaiting news of a date for Lewis' hip operation, although with the Lyme Disease testing happening soon, we are expecting that to be postponed until we know the results of the tests.

And finally, here are some lovely photographs of Lewis' Christmas. These two photos are from when Lewis visited the Bluebell Wood Childrens Hospice to deliver some gifts from The Lewis Jeynes Fund. We were able to purchase light effect sensory equipment for 3 of the childrens bedrooms at the hospice and we hope they will be enjoyed by all who stay there.

Here is Lewis with his cousins Katy and Emily.

Here is Lewis having a story with Granny.

Lewis received lots of gifts from Postpals - thank you all for the lovely presents for both Samuel and Lewis.

Lewis with Grandad!

Lewis with Daddy, Katy and Emily.

Declan became an angel today

Lewis' and Nathan's friend Declan became an angel this morning. Please think of Declan's family who have lost a huge part of their lives. We have loved you since we met you Dec and we will miss your gorgeous face, but you will never be forgotten.

Please, visit http://www.postpals.co.uk/ to make a difference to a terminally ill child.

Hospital Appointment Today

Well today we had a routine hospital appointment, didnt expect anything from it, just another doctor to look at Lew and say 'nope nothing we can do, all very good, thanks very much, come back next year'. So I had a bit of a shock. It turns out that Lew has hip dysplasia and is going to need surgery in the next 3-6 months. His right hip is in such a position that if it is not dealt with soon, it will erode at the socket joint and the joint will become useless. So he has to have some surgery on the soft tissue around his hip and then have a brace and plaster for 6-8 weeks to try and sort the problem. We wont know until after the brace and plaster comes off if it has been successful. If it is not then Lewis will have to have surgery to the actual hip joint itself. We will have another appointment in the new year to go over all the details and to arrange a surgery date. Being positive, hopefully the brace and plaster will solve the problem and Lew's hips will be fine.

Bluebell Wood Childrens Hospice

At the end of November, Lewis and I spent a few days at Bluebell Wood Childrens Hospice. Lewis hadnt been very well so we decided it would be nice for us both to have a bit of pampering! What made our visit even better was that Debbie, Matthew and Ethan were there at the same time! We had a wonderful time helping out with the christmas decorations, and Debbie and I made a christmassy fireplace to really brighten things up! Thank you to all the staff who made us feel so welcome! We hope you like the photographs of our time at Bluebell Wood!

Surrounded by HUGE cuddly toys!

Having cuddles on a HUGE beanbag with mummy!

Lew loved this rabbit!

Matthew was having a chilling time!

Ethan being babysit by Winnie the Pooh!

Story time!

Debbie getting ready for Santa!

Fun in the ball pool!

Mummy making the christmas fireplace!

Lewis having a chill while Debbie worked on the fireplace!

The atmosphere was great once the tree was lit!

More progress on the fireplace!

Almost finished!

Mattnhew loved relaxing in this super comfy chair!

Putting the finishing touches to the fire!

HOORAY the fireplace is in place!

Debbie and Mummy sit in front of the fire after a hard afternoon's work!

You cant really see, but at the base of the fire are tiny electric tealights so that with the lights off, the fire had a lovely orangey red glow!

At the end of a very busy day, Lew went to bed with his Hoob!

In the morning the children made snowmen!

And then had a go at the sensory station.