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Tuesday, December 05, 2006

Tuesday 5th December 2006

Encouraged by my brother Jason's blog (the Mighty 'C') I decided to start my own but have no idea what to write so will just see what comes out lol! Last week I started going to nursery with Lewis. For 3 weeks before that he had missed nursery (and hence I had missed work!) as we had been in hospital. So last week, as Lew is now too poorly to go to nursery on his own without 1:1, I started going with him and spending the day with him as his 1:1 and its been great for both of us!!! Lewis has enjoyed spending time with his friends, and I have enjoyed being with all those lovely, happy, sociable children, making me feel so much better about life in general. Children definitely keep you young! Samuel has gone to stay with his Aunty Tania in London for a week. My sister Nicola and her scrumptiously scrumptious daughter Evie have come to stay the week with us here in Doncaster with my mum. My mum is just making me a cup of coffee and has given me a lovely bar of chocolate called Noir Framboises yummmm! So, my family. I am married to James (12th August 2006) and my sons are Samuel (from first marriage) who is 14 in May 2007 and Lewis who will be 3 on 28th February 2007. My mum, Valerie, lives on her own in Twickenham. My dad, Leslie, lives on his own (well with his ailing cat Sheba) in Teddington. My brother Jason (Mighty 'C') lives in Teddington too. My sister Nicola lives in Strawberry Hill with her husband Lee and their daughter Evie. My sister Tania lives in Twickenham with her partner Nathan, and their daughters Daisy (15 in March 2007) and Millie (3 in March 2007). So a bit more about Lewis. Lewis was born on 28th February 2004 and the pregnancy and delivery were normal. Lew developed normally, like any other baby of his age. He sat up at around 6 months, he started to crawl around 9 months, started to cruise round the furniture at around 11 months and started to walk (a little late) at around 17 months. From around 9 months Lewis started having reflex anoxic seizures. Just before Lewis' 2nd birthday (February 2006) Lew started to limp on his right leg. He was diagnosed with irritable hip and we were told to rest it for a bit. After a few weeks he was able to walk again, but then in April 2006 he stopped walking completely and would only crawl everywhere. In July 2006 he had his first seizure and we went into hospital. On 11th August Lew had his MRI. On 12th August James and I got married and on 16th August we went on our honeymoon - all 4 of us! In early September Lew had another major seizure and we were admitted to hospital for several days. Several tests were undertaken. In November 2006 Lew had a lumbar puncture, muscle and skin biopsies at Sheffield Childrens Hospital under general anaesthetic. On 2nd December we had to ring 999 for an ambulance for the first time. Lew was having a major seizure and it was affecting his breathing and he was turning blue. That was very very scary!

4 comments:

Jason Paul Tolmie said...

Hi manf:)

Welcome to Blogland:)
I am glad you find my blog interesting. I have the photos there in case it gets a bit boring;)
I think that this is a great way to stay in touch as I am at my computer so often and can read all about what you are up too and how Lew is.
You forgot to mention Samuel has Haemophilia. Hey, maybe Samuel could start his own blog up? I know of one other blogger who has Haemophilia and his blog address is; http://48weekflu.blogspot.com/ and he lives in Seattle in the US. His blog is very good and was started when he began treatment for Hep C. Samuel might find it interesting as there is a post about his Factor VIII he uses etc. He is a nice bloke too and Samuel can ask him or me any questions he wants.

Thanks for the photos too. I have already scanned them and Lee will bring them back on Sat. Is that Michelle Lort sitting with you and Nicola at Daddys old flat?

I'm feeling a bit spacey right now because of my HIV drugs. I will be better to reply etc tomorrow.

Speak soon manf:)

Hi to Lewis, Samuel, James and Mum & Nic & Evie too (whilst they are there;)

Jason
xxxxx

Wendy said...

Hello Darling

Thanks for all the very kind words about me and for giving us the opportunity to keep up with what is going on without bothering you through this excellent blog. It's lovely to see the photos of Lew and I'm really looking forward to seeing you all next week.

Lots and lots of love to you all

Wendy xxxx

Fingers crossed as always xxx

Smnth & Co said...

Hello again Jae!
Samuel has lots of websites, I will add the links when he gets back from Tania's as I dont know what they are!! I will add a little bit about him and then point people to his own link.
Hope you are feeling less spacey now!
Remember when we were in Gran Canaria? Cooooooooooooool!

Love Smnth xxxx

(Oh I will tell Samuel about your friend in Seattle as well, I wonder if I can add his link to my blog? Do I have to ask him first?)

Smnth & Co said...

Hellooooooooo Wendy!

Forgot you are coming next week, very exciting! Are the children coming or will they still be at school?

Oh well, we will see you on Boxing Day anyway, so excited about that!!!

Lots of love

Samantha xxxx

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!