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Friday, January 26, 2007

Baby massage!

Hello! Well yesterday was a very very busy day! We had a bit of a lie in which was lovely! Then we went to hospital for our first appointment which was with Dr Mordekar. It was a very positive meeting, and we laughed alot. Dr Mordekar was telling us that people who know Lewis (who work in the NHS) will see Dr Mordekar and he knows what they will say ... 'have you found out what is wrong with Lewis?' and he says before they even ask 'NOO! I still dont know what is wrong with Lewis!'!! More test results came back and they are all NORMAL!!! Dr Mordekar said its great that the results are normal but if the people who are reporting the results to him could see Lewis, they would see that Lewis is not normal!! He also mentioned that we should be on Professor Surtees' cancellation list at GOSH so fingers crossed we can get in before April. Then we went to the Renault garage and ordered a new car! Now dont think that because we ordered a new car that we must have won the lottery!!! From 28th February Lewis will be entitled to Disability Living Allowance - mobility component. If you dont already know, I'll explain. With the mobility component, you can, instead of having the benefit as money each month, have a new car for three years. So the benefit is paid direct to a charity called Motability who provide the car, pay the insurance and tax, and maintain the vehicle, and we get a reliable (hopefully!) brand new car! So we ordered a Renault grand scenic in eclipse (the colour) which is a kind of greyish black colour. It should be ready for us to collect mid March. So thats exciting! We had a visit from Roz and a nice cup of tea at home before going back to the hospital for our other two appointments! First we saw Dr Ahmad (Lewis' paediatric consultant) and then we saw Zoe (Lewis' dietician). Both of those meetings went really well, and again we felt very positive and upbeat. We also managed to pop in and visit Ilya who was looking very well to say he'd just had his tonsils out! I do hope Olga managed to sleep well last night in the hospital and that her and Ilya can come home today for some rest!! We arrived home quite late (5.40pm) and Lewis was soooo tired from his busy day that he went straight to bed!!! Margaret from SENCO popped in briefly to lend us a mathmos projector lamp which is fantastic. I put it on for Lewis this morning on the ceiling above the bed and he was mesmerised! So thank you so much AGAIN Margaret! This morning we had a mad rush to get to baby massage for 10.30am! And it was the best! Lew was, as expected, the oldest child there. They were mostly teensy babies! But he loved it anyway and it was great for me and him to do something together like that. We both really enjoyed it. Lew loved looking round at the babies and we also met a lady and her little girl who we had seen many times at Ward 31 when we were staying in. She had stayed in alot longer than us, her little girl is not very well at all, but thankfully she is out of hospital at the moment and so we were able to have a nice chat. As her English is not very good, she is Chinese, our conversation was difficult, but we managed! But any assistance with the Chinese language would come in very handy for next week! Also, she showed me some traditional Chinese massage for Lewis which she does on her own little girl. Like Lewis, her little girl has a silk tube down her nose, but unlike Lewis, her tube does go down to her bowel which she had to go to Sheffield for. We are looking forward to seeing her again next week. Lew and I came home so I could have some lunch while Lew watched some Pocoyo that I had recorded for him, and we are shortly going to visit Denise, Oliver and Maisie! Thank crunchie its Friday! Lewis and I are going to the theatre tomorrow to see The Lion, The Witch and The Wardrobe! PS. Thank you Mel for your card! ... again! x

4 comments:

Lawse x said...

AAAAAAAW, what a lovely post :)

SO glad your appointments went well, and that Lewis's results were normal etc :)

Sounds like you have been really busy.

love the new pic of lewis at Musical Minis! :)

glad Ilya is ok too :)

have a great time at the theatre tomorrow..you both deserve it

im all smiley now... :) was lovely to read sucha positive update

take care all, and have a fantastic weekend

lawsey x

Wendy said...

So glad to read such an upbeat entry - it sounds like Lew is in better spirits than when I was there at the weekend! He was so sad then it broke my heart. Give him kisses as usual from us and tell Samuel we are looking forward to seeing him for the family party, as the night before we are having a Laser Quest party for George and his pals and this means he will be able to be there as well! We are still hoping against hope that you will be there too - but if not, there is always the live action internet link!

xxxx

Stephen & Yolanda said...

so good to read your post and look at your pictures! So great to see Lew enjoying himself! Hope you have a fun day out today! I think I am going to just laze at home! Pathetic!!! Lots of love to you and hope we get to see you soon... Joel is almost 100%!

Lucy said...

Brilliant news! That sounds like a lovely day.

Really looking forward to seeing you all again in a couple of weeks, we are all very excited.

Lots of love

Lucy xx

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!