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Saturday, February 17, 2007
Infections
So why is the worry of Lewis getting a chest infection such a huge worry for us?
Well, first of all, as he cannot move voluntarily like most children of his age, he cannot clear saliva and mucus which build up in his upper respiratory area. This increases the risk of a chest infection. Secondly, as his swallow ability is not very good, there is a high risk of aspirating his own saliva. Finally, due to the gradual deterioration of his muscles, there is a real concern that the muscle around his lungs will start to fail and this would seriously effect his ability to breath.
So its quite a big worry!
Lewis had a reasonable night, I had to go up to him a few times as his coughing was distressing him. This morning he was having alot of difficulty with his breathing and coughing so he came down to bed with me to watch Milkshake for an hour and then he went back to sleep until 10am! We both certainly needed the extra zzzzzzzz's!
Today we are going to look at flooring for the conservatory - cheap and cheerful, thats us! We want to get it ready for Lewis' birthday party on 28th February, fingers crossed we can!
We had some upsetting news this weekend about a very good friend of mine. His name is William and he has a twin sister called Bethany and twin younger sisters (!!) called Elisha and Emily. I met William and Bethany (and then the rest of the family, includinng mum and dad, Karen and Joe) when I was working at St Francis Xavier School in Balby, Doncaster. William contracted meningitis when he was very young and has had problems resulting from this including many operations. William is now 9, or 10, I think!! Anyway, he is the must scrumptious young man, as are all his family. They are the kindest people you could ever hope to meet and the children, well you can tell that Karen and Joe are very very good parents. Well, William has been in hospital recently and has been diagnosed with type 1 diabetes (the type that requires regular insulin injections) so William (and the family) have another hurdle, another thing to deal with, but they will take it in their stride and get on with it, as one does. Please please send your prayers to William and his family. If you are coming to Lewis' birthday party on 28th, you will meet the family yourselves!
And Joel - I am soooo sorry I got your birthday wrong! You are in fact 1 day older than Lewis, your birthday is on 27th February!!
I would like also to mention a very special person who we came into contact when we were looking for an au pair. Laura (lawse/peanut) is a young lady from within UK who is Lemar's BIGGEST FAN EVER and who has also become a very good virtual friend. Laura has written to us, sent cards and emails and is a very very kind and understanding person - maturity far beyond her years. Laura has very kindly offered to start some fund-raising for Lewis so watch this space for news and updates on Laura's exploits (which I hear will include abseiling and celebrities!). Thank you Laura, for being you!
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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.
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.
Useful links
- Post Pals - great site for helping poorly children smile
- Bluebell Wood Childrens Hospice
- The Mighty 'C' - my brother's amazing blog
- Kirsty A - a very special lady
- Nathan Bovell - scrumptious dude!
- Declan Kelly - gorgeous boy!
- Parents of Kids with Epilepsy
- My fantastic photographer friend
- Samara's video - please please watch
- Natalie Robinson - Lewis' LURV!
22nd October 2005
April 2006
August 2006
September 2006
October 2006
October 2006
30th November 2006
30 November 2006
1st December 2006
7th December 2006
7th December 2006
7th December 2006
7th December 2006
December 2006
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
2 comments:
why is it seemily all the good people seem to get all the poop happen to them?
have a good weekend :)
oh revenge is sweet!!..look out! enough of those laura comments haha
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