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Friday, June 15, 2007

No photos, just a quick entry

Just had a major panic. Went to check on Lew and his plaster that holds his tube onto his face had come away and so his tube had become slightly dislodged. I dont know how long it had been like that, but thank God it had only become slightly dislodged. If I had not noticed, and if it had worked its way further out of Lewis' nose (which it does if its not stuck down), the milk that is pump-dripped into his stomach through his tube all night could have started dripping into his lungs. How long until I would have noticed? Would he have started coughing or choking? Or would it have just slowly drip drip dripped into his lungs until he drowned? This is why we have chosen for Lew to have the surgery to have a tube fitted directly into his stomach. Because every single night brings this same worry.
Ok I calmed down a bit and took a photo - after I put ANOTHER plaster on! These arent the 'proper' plasters we are meant to use, but the ones we are meant to use last 1-2 days before they peel off so we have resorted to 'real' plasters in desperation!

4 comments:

Anonymous said...

Glad you sorted it out when you did and Lewis is ok. At least when he has the operation it will be one less worry for you when the tube is moved.

cheryl xx

Anonymous said...

Aaaaww :(

Glad you managed to sort it quickly etc....

He looks so peacefull in that sleepy picca..

take care and have a good weekend

thinking of you all,

lawsey

Anonymous said...

awwwww, sorry to hear about Lewis' tube :(
Glad you were able to sort it out quickly though. Hope Lewis is Ok now.

Well Done and Keep Strong
Love Sian XxxX

P.s. Your post this month may arrive abit late as i havent been able to send it yet, but hopefully will send it soon

Take Care

Anonymous said...

Oh bless the little man, Decs tube was forever doing the same Sam so it was a releif when he got his button!!! Lewis looking gerogeous as ever, chin up honey ur amazing mummy!!!

Love Caroline n Deccy

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!