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Monday, January 22, 2007

Not happy

Spoke to Great Ormond Street Hospital today ... the earliest appointment they will be able to offer us is April and we cant confirm that until it has gone through their allocations process which can take a week or two .. so not the best news. Still, at least we can plan things for the next couple of months without having to worry we'd end up dropping everything for GOSH. Lewis has had such a good day today, he has been smiling and happy. I think he must have had a cold and sore throat (which I have now got!) and so now he's feeling better. Thank you to Teresa and Luke for coming over this morning to watch Lew while I showered! Thank you Denise for putting up with us all afternoon, moaning and tears, and for offering to come over at 8am tomorrow for the shower patrol! And Gill, it was so lovely to see you. Tracie (butterflykiss) thank you for your email, sorry I havent replied yet, just havent got my head round it yet!

5 comments:

laura said...

heya

aaww, eek with regards to the appointment wait :(

i'm gunna email you tomorrow, but i totally know how frustrating it can be waiting for important hospital appointments and such like... as a child i had to have very regular visits to the bristol childrens dental hospital..and also from a parents point of view (having seen my parents go thru something kinda similar in terms of appointment wait times)... it is really hard.. just wanting the best for your child, yet having to wait to find out things and stuff.. yea, hhm, im not explaining this very well, but like you say..at least you can plan things and having things to look forward to and enjoy in the mean time :)

Really glad lewis had such a good day today :)
So glad he has been smiling and happy, shame you've now got his cold and sore throat though.

Anyways, i think i've babbled on enough for now,

Hope Lewis (and all of you) have a good day tomorrow.
Enjoy your girlie night in with Chinesse :) yum!
and take care all,

Lawsey x

viks said...

I've got around to signing up to blogspot to I can finally leave a message! Sorry to hear theres a waiting list for an appointment, glad Lewis has had a good day though :)

Love Viks

Smnth & Co said...

Hi Laura!

Lew has been smiling and being happy again, its great! I think the stint in hospital (and the reasons for it) really did upset him alot and now he seems to be feeling alot better so its great to have him smiling and happy - we were worried that his condition had deteroriated again so that he couldnt actually smile anymore.

The chinese last night was lovely! BUt went to bed VERY late!

Smnth & Co said...

Hi Viks!

Great to have you comment on my blog! I feel honoured! A famous person has looked at my blog! (That will get people wondering about you now!).

xx

laura said...

YAYYYYYYYY :)

So glad Lewis has been smiling and being happy again :D thats great :)

And glad you enjoyed last night :)

hope you all have another good day today :)

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!