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Wednesday, July 25, 2007

The Wellchild and Best Magazine Childrens Health Awards 2007

Unkown to me, James had come across a copy of BEST magazine and noticed that nominations were being invited for the Wellchild and Best Magazine Childrens Health Awards 2007. So, he put together a very touching letter which he posted off just in time for the deadline for entries (please post your email in our guestbook if you would like a copy of the letter emailing to you). Today we had a telephone call from Wellchild/Best to say that Lewis had been chosen for the Best Brave Child Award 2-3 year olds. It was overwhelming. What is hard is knowing that we would much rather Lew wasnt in a position to be winning such an award, and also knowing that hundreds of other children all over the country are brave just like Lew. So Lew will be collecting this award on behalf of all of them.
I have to admit, I had never heard of the charity Wellchild, so I am now hoping to raise awareness of this very worthwhile charity via Lewis' website so please please follow the link and see what Wellchild can offer to children like Lew all over the UK and perhaps you could even help by donating not just money but your time! Check it out! We will be attending an award ceremony in London in October (Lew's health permitting) but will keep you up to date until then on developments. Thank you to Wellchild for choosing Lewis who really is such a very brave little man. He smiles despite all the changes he has gone through, the pain and the deterioration. And of course all our love and thoughts go out to the parents of children like Lew who also have super brave children just like Lew.
Helpline number - 0808 801 0330
Helpline email - helpline@wellchild.org.uk
Helpline text - 0778 147 25 99
Now, for a change I have included an article written by Phill who is married to Jayne and they have a son called Cameron who is 3 and who has epilepsy. Jayne and Phill have been very helpful as we get used to Lewis' new PEG as Cam has had his for 2 years so they are experts in the field! We 'met' on a community forum called POKWE - Parents of Kids with Epilepsy - and below Phill provides more detailed information about how POKWE works. We have had some fantastic advice and support from other POKWE members too - Lewis' friends Declan and Nathan - their mums post on pokwe too!
Here is a photo of Cameron:
At the end I've added some photos of Lew as well, with NO TUBE hooray!
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So ... POKWE - an article by Phill
The original POKWE (Parents Of Kids With Epilepsy) group started on Yahoo! in 2001. I joined in 2003 after we found out about Cameron’s epilepsy. The group has a wealth of knowledge from all over the world. All the families have no medical background, except for what they have found out from talking to the doctors and articles the members have read on the internet or publications. As the group expanded, it started to go over the ethos of a “small family” group. Tracey, the site owner decided to expand it to the next level, and set up pokweuk.org, to run alongside the Yahoo! group, as Yahoo! is limited to what it can do. Tracey funds the site out of her own pocket, and does it for 2 reasons. The first is to become a beacon of support to parents who have found out about their child’s condition, and need help and support, the second, it is dedicated to her son Kevin, who passed from a form of epilepsy called SMEI. Tracey began the basic framework of the site in June 2004, and asked me to become a member of the site admin team. Together with the site moderators, we hope to build upon the success of the Yahoo! site, to remain supportive of families around the world and to become a “one stop shop” for all things on epilepsy.
The site is split into 2 sections. The home page which contains articles which have been written by parents, or pieces taken from other websites. Along with these, we have personal stories from family members; giving background information on their child, as well as medication and other things they have tried to help control their child’s condition. The second part of the site is a web forum. This contains many topics, which members can reply to. Part of this is a joke section just somewhere where members can chill out and forget their worries for a while. Or if they need to, they can rant and scream in a topic section, just to let off steam. One section that we like to get people to do is a roll call. This is just a small section where people can post on their monthly activities, child’s progress, and how the family are getting on. The POKWE admin team look forward to welcoming you to our site.
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Lew's PEG - a bit sore but its getting better each day
Lew just after his operation. Lew catching up on sleep the day after his op. You may notice his white patch on his cheek - this is where his plaster was that held his ng tube on his face! Lew's first smile after his op was saved for his brother Samuel! Just chillin with my bro! Lew's good buddy Declan gave Lew a gorgeous glowing bear who accompanied us to the hospital! Lew got a parcel from his postpal (http://www.postpals.co.uk/) Helen - thank you Helen! Lewis' windmill from postpal Helen. Had to include this photograph of Samuel and his great pal Nikhita - its hard to believe Nikhita is almost half Samuel's age (Samuel is 14 and Nikhita is just 8).
A quick thank you to postpal Sian for Lewis' star stickers which arrived today! Thanks so much Sian and Jamie!

Thursday, July 19, 2007

Home again, home again, jiggety jig

We are home again. Lew seems to be fine with his PEG. Will hope to get used to it over the next few days. Will post properly, pics, etc, probably over weekend. Thank you all for your kind emails, texts and cards and letters. Also thanks to those who were able to visit - it meant a great deal to us.
(PS. Grandad took the photo above on the day before Lew went in for his op - now he doesnt have the ng tube anymore, we can see all of his gorgeous face!)
And here is a photo that Daddy took this Wednesday - Lew (with no NG tube hooray!) and Samuel, and the lovely windmill that Lewis received from his postpal Helen, thank you!

THANK YOU to Catriona, Neil, Tilly and Eliza for the WIGGLEDANCE Live in Concert DVD! We look forward to singing along!

Thank you so much Dessina (?spelling) from Chicago for your lovely postcard which will go on display on Lewis' special wall.

Thank you very much Rachel (postpal) for your two postcards from Wales. We hope you had a lovely and that you have a great time in Devon too.

Saturday, July 14, 2007

Next week

Hello, hope you all managed to catch Lewis in the Daily Mirror. Just a quick post as I wont get chance to update tomorrow, and we go into hospital on Monday morning for Lew's gastrostomy and biopsy surgery so I wont be able to update next week either. Please please do think of Lew next week. He would love to receive cards or letters from you while he is in hospital. You can send these to: Lewis Jeynes Ward S1 Sheffield Childrens Hospital Western Bank Sheffield South Yorkshire S10 2TH I will update when we get home, hopefully next Friday. (Fingers crossed, of course, that Lew will be well enough for the surgery to go ahead).

Monday, July 09, 2007

Some photos from the past couple of weeks

Enjoy the photos - they are out of order (the latest ones are first, the older ones are at the bottom!) but I'm too tired to sort them out!!! This a pic of Lew yesterday afternoon in the assessment unit at DRI
This is from Tuesday 3rd July when Lew had his orthoptic appointment This is from last night when Lew had his second seizure and I thought we might have to phone another ambulance. You can see his mouth is twisted slightly and his eyes are staring - he was unconscious and seizuring but thank goodness it only lasted 2 minutes. This was Oliver finding a new way to play his game!
This is Maisie preparing for Royal Ascot or Ladies Day at the St Leger Festival!
This is Lew in bed with his splints
There were quite a few geese on the lake the other day! This is Lew today (9th July) with is new head support which Anna (Nathan's mum) very kindly sent us in the post. It stops Lews head from flopping forward in the car. It doesnt look great, but it works and that is what matters!
This is Lew in bed this morning with his second gift from Anna and Nathan - a cheeky monkey!
On Thursday Lew got a surprise present from his other friend Declan which was a glow monkey and some super cool Bob the Builder pyjamas!!!
Lew fell asleep on Mandy in Fundays on Wednesday afternoon!
Before Lew fell asleep on Mandy he had great fun playing with Marie in the ball pool! No wonder he fell asleep!
On Tuesday afternoon Kath and Janette came from physio to fit Lew into his monkey stander again as he has grown 2 inches in the last 2 months!
Lew was alot happier about being in the stander when he was allowed to watch The Chuckle Brothers!
On 30th June we went to a fantastic Fun Day at New Tribes Mission near Grimsby. Despite the miserable rain, everybody had a fantastic time, lots of delicious food, cakes, face painting, caricatures, bouncy castle, activities, and of course we got to spend the day with Yolanda, Stephen, Naomi, Joshua and Joel!
Thursday 28th June was (yes I admit it) my Birthday. We had a lovely day with Yolanda and family in Grimsby but I was very sneaky and didnt let Yolanda know it was my birthday!!!
Yolanda, Stephen, Naomi, Joshua and Joel made an incredibly generous donation to the Lewis Jeynes Fund - thank guys, you know we love you and it is so great that we are able to see each other a bit more nowadays - we're okay in the summer - its the winter (coughs, colds, snow) that keeps us apart lol!
On Sunday 24th June, James, Lewis and I went to Normanby Country Park. It rained rained rained, but we're English - we are used to it haha!
So I hope you enjoyed the photos.
Lew didnt get much sleep last night (he had a second seizure at 10.25pm but it only lasted 2 minutes thank goodness). Today we did a few jobs around (dropping off wee sample at hospital, picking up prescription for epilepsy medicines from doctors, picking up medicines from chemist) and then Lew went to bed at 6pm. He did have another seizure this afternoon just after 4pm which lasted for 4 minutes, so still not quite the magic 5 minutes which means rescue medication and possible ambulance.
I do want to say thank you so much to the nurses at the Doncaster Royal Infirmary Childrens Assessment Unit (CAU/PAU) who were great with Lew (as usual) and really looked after us.

Sunday, July 08, 2007

Hospital

We have been in hospital again today. Lew has had major secretions and then this afternoon he had a big seizure requiring rescue medication which supressed his breathing slightly and combined with the secretions, he was very poorly so I took him to the assessment unit at the hospital. He was put on oxygen for a bit and his levels went up. We left the assessment unit around 9.30pm. Lew is in bed now (my bed, got to keep a close eye on him) and just after 10pm he had another seizure but only a small one (2 minutes) but it did prompt me to ring the hospital and check what I should do if he has another big one tonight - we are to ring an ambulance straight away and get him in. I have packed our overnight bag just in case and now cant sleep as so hyped up and on edge. Arrrghhhh! I just hope he's okay for surgery next Monday.

Thursday, July 05, 2007

Not very well

Lew has not been himself for a few days, I have known something was coming, just not known what.
Well today he has been very poorly, he has had two seizures (one requiring rescue medication) and he has had several absences, he's not really smiled, and he's been very distant.
He's had trouble breathing, lots of secretions in his throat, and he almost suffocated when his head fell forward in the car and he couldnt lift it back up again and so his airway was blocked. I had a major panic as I had to wait a few seconds (probably 30 seconds) to pull over without causing an accident and I am afraid I lost it a bit, and got Lew out of the car, gave him a big long cuddle and cried my eyes out.
Lew's tube also came out (again, third time this week) so that had to be re-passed. Bless him, by 6pm he was so tired, absolutely shattered, with dark circles under his eyes. He's in bed now, fast asleep. Let's hope its doing him some good.
The worry is of course that he will be too poorly for his surgery on 16th July, but we hope that whatever 'bug' he has picked up will have gone by then. It does mean though that we are going to be very unsociable this next 10 days to avoid Lew picking up any other infections.
I know I still owe you all a proper update for the last week or so, but to keep you going until then, here are some recent photos. And dont forget to check out the videos on You Tube if you havent already - http://www.youtube.com/profile_videos?user=SmnthJeynes **********************************************

At the New Tribes Mission Fun Day on Saturday 30th June (will tell you more about that when I do the proper update). Lew had a fish painted on his cheek. As you can see it was a very busy day and he needed a bit of a power nap!

Lewis with our wonderful friend Yolanda and her youngest son Joel who is 1 day older than Lew!

Wednesday, July 04, 2007

A couple of new videos

Still no proper update, sorry! But I have added a couple of new videos to or YouTube if you would like to have a look. The link is: http://www.youtube.com/user/SmnthJeynes I will update soon, promise promise!!!

Monday, July 02, 2007

So much to do,so little time to squeeze it all in!

As usual, we've been super busy so I havent had time for an update and this isnt a proper one as I still havent got time for a proper one, but just a quick hello from us and to say Lew is doing okay, we think he's got a bit of a cold so we're trying to make sure it doesnt develop into anything more serious, especially with his surgery coming up two weeks today - very scary. Please, even though we dont get chance to update often, do leave your comments as it really does mean a lot to us, its like our 'guest book' so we know you have read the blog, have found it interesting (or not?!) and its just nice to say hello! So, I will update later this week, soooo many photos and so much news of our exciting activities! But until then, please remember Lewis is going into hospital on 16th July for his surgery so if you are that way inclined, please do pray for us. As you will have seen if you have visited Nathan Bovell's website (Lewis' partner in the crime of keeping mummy and daddy on their toes!) Nathan is also having surgery in July so please, your thoughts and prayers for Nathan too as, like Lewis, he does not react well to anaesthetic and neither Nathan's parents, nor James and I know what will happen on the other side of the anaesthetic so it really is a difficult and very frightening time. Your prayers and thoughts will help us through, I'm sure. So, until later this week!

Take a look at other videos of Lewis at YouTube

The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

22nd October 2005

22nd October 2005
Lewis checking our supermarket receipt!

April 2006

April 2006
Colchester Zoo, just before Lew stopped walking

August 2006

August 2006
Lovely ice cream yummmm!

September 2006

September 2006
Ward 30 - just after Lews first major seizure

October 2006

October 2006
Doncaster childrens assessment unit - 'm on the phone!

October 2006

October 2006
In DRI childrens assessment unit blowing up rubber gloves!

30th November 2006

30th November 2006
Ward 31 - Blowing kisses to Daddy! Mwah!

30 November 2006

30 November 2006
Ward 31 - Playing cars!

1st December 2006

1st December 2006
Frankie & Benny's - just discovering cant eat very well

7th December 2006

7th December 2006
My arm doesnt work but my tongue still does!

7th December 2006

7th December 2006
Playing with Evie and mummy on the sofa

7th December 2006

7th December 2006
Lew in the bath with Evie providing entertainment!

7th December 2006

7th December 2006
At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!

December 2006

December 2006
Playing with Miss Jodie at Building Blocks Nursery

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love

Lewis' cousin Millie

Lewis' cousin Millie
January 2007

Lewis and his cousin Evie

Lewis and his cousin Evie
February 2007

Lew and his cousin Anna

Lew and his cousin Anna
February 2007

12th December 2006

12th December 2006
DRI Christmas Party - meeting Father Christmas!

30th December 2006

30th December 2006
Lew in Ward 31, not very well

5th January 2007

5th January 2007
Ward 31 - playing with my lovely balloons!