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Wednesday, April 04, 2007

What sunshine? I didnt see any sunshine!

Tuesday afternoon we spent at Denise's - lovely galaxy chocolate cake, spaghetti bolognese and bucks fizz yummmmm! This pic is my Victoria Beckham pout (note: BEFORE bucks fizz lol!)
This the the Bucks Fizz!
This is Maisie and Oliver mesmerised by Monsters Inc DVD!
And so here we are at Wednesday and what a day! Lew had a good night and we were up surprisingly bright and early this morning (8.30am is early for us nowadays!). We got bathed and dressed, and I noticed a rash on Lewis' face and shoulder so I put some savlon on and got him dressed.
This is Lewis' rash:
We went to meet Diane and Mandy (Homecare) at Fundays (St Sepulchre Gate West I think) and Lew had a great time! He was a bit upset a couple of times at being moved around, but once he got used to Diane and Mandy, he was fine and enjoyed very much the ball pool and the see saw whale! The lovely ladies at Fundays made him an easter bonnet and also he won a prize in the easter bonnet competition!! Well, all the children who took part won a prize, it was very fair indeed! I would definitely recommend Fundays to anyone who wants a very good play area - its huge, its brilliant for kids up to 12 and its got a great snack bar/cafe bar that serves gorgeous food and drink very cheap. Its only £2.50 to go all day (I think) and if you want a party there, its £5.50 (I think) which is for hot or cold buffet, party, and unlimited time in the Fundays play area plus party bags. I am thinking of having a 'no reason' party for Lew there soon with all his friends as his birthday party was such a huge success but this time I will only be able to have 10 children so it will be not cost me a million pounds lol! After Fundays, we were worried about Lew's temperature and rash so we popped to the chemist. Diane watched Lew in the car while I went in to get some calpol, calprofen and sudocrem and then we said goodbye to Diane (her last day, she has a new job) and to Mandy who will see again next week. We drove to DRI and I was going to take Lew to hydrotherapy but when I checked his rash, it had got much worse and his temperature seemed high so I went to the childrens outpatients with him to see Kath (physio who takes hydro) and she said he should see a doc so she got a doc to come (she is such a star!) and he said Lew should go to the assessment unit downstairs to see someone properly .. so off we went! This was around 1.15pm. I had an appointment for myself at DRI at 2pm so I had a cuppa in CAU while Lew watched a Thomas the Tank Engine video then we went up for my appointment. On the way, we bumped into Dr Ahmad and he said that Lew should probably see a dermatologist about his rash. While we were in my appointment, Lew fell asleep (he was sooooo tired) but after a few minutes he went into an unconscious seizure on his left side (face, arm, leg) and so we monitored it for a few minutes and when it didnt stop after 4 minutes I ran back to CAU to get his rescue medication ... I was KNACKERED FROM THAT RUN!! I ran Carolyn (in CAU) on the mobile as I was running to ask her to open the door to CAU so I could get his medicine quick and she was waiting for me when I got there!! Another super star! I zapped back to the other department where Lew was with the doctor and Lew's seizure had stopped PHEW! It had lasted 8 minutes though which is a long time for him but at least I didnt need to use the rescue medication, but I will learn not to leave his bag somewhere else in future, even if it is just in another department at the hospital!!!
This is us in the CAU: We carried on with my appointment and Lew was okay after his seizure. I went to have a blood test and then just before 3pm we went back to CAU and saw the doctor who referred us to a dermatologist. The CAU were (as ever) very very helpful and worked hard to get Lew an appointment today so we didnt have to go backwards and forwards so at 4.30pm we had an appointment at The Lincoln Suite. James arrived there just before 4.30pm and we went in to see the dermatologist. As usual (for us) there was no clue what had caused the rash so we have got to go back tomorrow so that Lew can have some patches put on his back which will stay on for 2 days - these are to see what he might be allergic to (if anything). Then we need to go back on Tuesday to see what results the patches have left. Its all go here!!! The pharmacy very very kindly stayed open for us to get Lew's cream (betnovate sp?) and some super moisturising cream for skin conditions and the dermatology receptionist sorted it so we could get our appointments for tomorrow and Tuesday - everybody is so helpful, we cannot complain. We went back down to CAU to return Lew's notes and to say thank you and goodbye, especially thank to Carolyn, and we also bumped into Janette who we havent seen for a while so it was lovely to be able to catch up. We came home and put Lew straight to bed. But because I have been inside most of the day, I am going for a walk later to get some fresh air!!! I just hope its sunny tomorrow! Tomorrow lunch I have Jill and Johnson, and Lynda and Callum coming to have lunch with Lew and I which will be lovely and I just hope the weather is nice so the children can play in the garden while us mums relax and chat! On Saturday we are going to have some casts done of Lew's hands (one with each of us holding his hand) at Babyprints (www.babyprints.co.uk) which should be interesting!

1 comment:

Anonymous said...

awwww well done Lewis for winning the competition! sounds good at Fundays and very cheap indeed. I hope ur 'no reason' party goes well (if u have 1!) Lewis' rash looks really sore. :( bless him. I love the pic of Lew in the ball pool, so sweet...

Anyway i better go 2 bed, my mums moaning at me! lol
Take Care
Sian 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!