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Thursday, March 15, 2007

Sooooooooooooooo busy!!!

Sorry for the long wait for an update! We have been so busy! I havent even checked my emails and have 63 to check so if you have emailed and wonder why you dont have a reply - now you know!! First of all (before I forget) I would like to thank two people. Annmarie (and her family) for the most awesome portrait photographs of Lew which were delivered by her husband on Tuesday evening - I had no idea they were coming, just that Mike was dropping something off - and they really are the best photographs I have ever seen. Annmarie is an AWESOME photographer, some people are just naturals and she is - so if you get to come to our house, make sure you look at the photos (which Annmarie sent up complete with frames so they were ready to display!). Annmarie does all sorts of photography so if you need any REALLY GOOD photos taken, please do think of asking Annmarie! Also, Katie Plant -thank you for Lewis' cards and for the cutest Scooby Doo! Please do keep in touch! And ... a Postpal sent Lew a Winnie the Pooh video - we havent watched it yet, but Lewis was absolutely mesmerised by the front cover and smiled at it alot!! So whoever sent it ... thank you so much!!!! Yes, I know thats three people - but I dont know the name of the third person lol! So on to our busy life! Well on Saturday I went into town with Jodie and Jin Qui and Lew stayed at home with some quality time with his Daddy. I also got to meet Jodie's mum and brother and sister which was so great as I have heard SOOO much about them, but never met so it was really good finally to meet them and they are lovely. And Jodie looks just like her mum and her mum looks half her age - lucky people! Courtney and Brad were very cute and very helpful too, I hope they can come and visit us at home one day and meet Lewis and Samuel. Jin Qui went home as Jodie and I had an appointment, but later I got a phone call from Jin Qui about Xi Sahn. I wasnt sure what Jin was trying to say so we rushed back over to the house and poor Xi Sahn had blood coming from her mouth - alot of it - so they zapped her to hospital and Jane came back to our house to stay the night. Lewis was so excited to see Jane - he really loves her. She is lovely, she talks CONSTANTLY!!! Questions questions questions - but her English is improving all the time - she is practically bi-lingual as she also speaks fluent Chinese (not sure if its Cantonese or Mandarin as of course I cannot tell the difference lol!). We put Lew to bed and then we gave Jane a bath, some tea, then put her to bed as well. I dont think she is used to going to bed so early!! A bit later, I heard her crying and she was missing her mummy so she came in bed with me and slept through until about 7.30am. Lew had a bit of an unsettled night so I sent Jane downstairs to James (more questions questions questions for James!!) and I brought Lew down to bed with me and we slept in until 10.30am lovely! Around 2pm I took Jane back to her mum and dad at the hospital - Xi Sahn is still in - she is quite poorly so please pray for her. Sunday afternoon we went to Tesco (such an exciting life we have!) and then we came home to relax a bit - we needed to after the experience of looking after a 4 year old girl!! Monday came around again - HAPPY BIRTHDAY JAMES!! We gave him his cards and his present in the morning before he went off to work, then we went to group at DRI. It really is the best, we love it! Lew has such a great time! And he has settled in with Marie (Bluebell Wood) so quickly! Its lovely! I am very confident in leaving him with Marie in the group while I go for a cup of tea in the hospital canteen. So Lew played with sand, had his feet in a foot spa (!) and generally had a great time with Marie, Rachel and Jill, and Linda while I went for a cuppa with Karen and Craig and Heather, collected my Avon from Karen (thank you!) and then I went up to see Jin Qui and Xi Sahn. When I came back to the group, the children were just going down to the sensory room so I went down with them! I LOVE the sensory room! Lew loves it too! He sat with Marie and he loved watching Daniel and Eden play and loved watching the bubble tubes, the pretty lights and looking in the huge mirrors! After the group, we sat and chatted with Jill, Rachel and Linda for a bit while they ate lunch, then we went to visit Denise, Oliver and Maisie, who have just got back from their holiday in Dominican Republic!!! Congratulations to their friends Angela and David who got married there! We had a lovely long chat, catching up on the last 2 weeks, and we had a nosey at the building work Denise has had done while she's been away - new kitchen, utility room built in and conservatory still in progress) then we had to zap off to collect ... OUR NEW CAR!!! Roz very kindly agreed to come and help me, by driving my car to the car garage so I could drive the new car back, but we had no idea how long it would take! We were there for over an hour! And Lew had fallen asleep in my car so Roz stayed with him while James and I were inside signing stuff and going through all the ins and outs of having a motability car. Then Lew woke up and Roz texted us to say 'Lew has woken up, I am trying not to turn round so he doesnt realise its not you'!!! But .. my phone was in the car haha! Anyway, Lew was fine and he loves Roz, but he just gets disorientated if he wakes up and cant see his mum or dad. The car is fabulous and we love it!!! After all that excitement, we came home, chilled out a bit then it was time for bed! On Tuesday we went to group at DRI again and it was so good. Its a lot busier on a Tuesday and the parents stay as the children are that bit younger and less independent, and again Lew had the best time! Jill and Rachel had been sooooo busy - they had taken photos of all the children, had the children decorate 'picture frames' and had made framed pictures for all the mums for Mothers Day! We also got a beautiful mothers day card decorated with butterflies that the children had painted! After group, we should have gone to musical minis, but as we sat and chatted with Rachel, Jill and Linda again, until nearly 1.30pm, we went to TK Maxx as we didnt want to go home yet .... and because I wanted to drive my new car round a bit more! I bought Lew a fab bag which should have been £69.99 but was £12.00!!! Bargain! Its really cool, its got squillions of pockets in and a changing mat and all useful stuff you need with a small child, its made by Samsonite and its label is 'Sammies' so thats really cool cos its MINE haha! Its also decorated as if its a tortoise, so cute! We came home, had a sit down and a rest, then it was time for bed for Lew. James was in London overnight at the ACE annual dinner (very posh!) so I had invited girlfriends over for a chinese take away. There were 9 of us in the end - me, Nicola, Jodie, Helen, Rachel, Karen, Olga, Teresa and Van - we were lucky that Van arrived has she had lost her diamond ring! But phew she found it! We had a great time, and Ian was able to come by later to give Olga a massage which she really loved!!! And of course, Ian got to scrabble through our chinese left overs!!! Wednesday, our friend came just after 9.30am - she is such a good friend, helping us out with trying to keep on top of the cleaning every few weeks! And Lew loves her! Then we had to rush about to meet Jayne (Homecare) at Lizzie's house for 10.30am for my waxing yay! We got lost (for a change!) but werent too late! Lew sat with Jayne watching TV in the lounge while I relaxed in Lizzie's in house 'salon' and had all my manky hairy gorilla bits and pieces waxed - including the jungle armpits!!! Then we had a lovely cup of tea and a lovely chat - Lizzie has also become a very good friend - we met when Lizzie did my make up for our wedding in August. Her son, Mavrick, is soooo gorgeous and cute and Lew loved to watch him play! We have agreed that we will make the effort to get out and have a picnic at the park with the weather getting nicer. At 1pm we had hydrotherapy with Kath and Janette. We quickly popped up to see Xi Sahn who was looking somewhat better, and then we rushed back down again to get changed to go in the pool. I went in this time (phew lucky I had been waxed first!) and we had the best time! We must definitely definitely go swimming with Lew (Armthorpe baby pool is lovely and warm and totally suitable) but I need someone who can come with us to help - it needs two adults - so if any of our friends fancy an hour in the pool with Lew one week day afternoon, let me know!!! Then we had to come home and start preparing a feast for James - he was bringing Ena home with him from London (his secretary in London office who has now left to go back and live in Ireland and who also was buying our white car from us) and she had NO IDEA that James had arranged for her work colleagues from the Pontefract office to come for a 'farewell meal'. Lew went to bed just before 7pm. Then Jason arrived (but sadly couldnt stay due to some DIY commitment !!!), then Helen arrived - and still Ena did not realise what was going on! A bit later, Sandra and Barry and Sue arrived and then Ena kind of guessed that something was going on! We had a lovely evening, chatting and eating and drinking, but I was soooo tired that I left them to it (talking about work no doubt) and went to bed around 9.30pm. Today, Jayne is coming at 10.30am, we are going into town to a chinese clinic to try accupressure on Lew, Katie from Bluebell Wood is coming at 1pm (I think!) and then we are going to visit Karen, Joe, William, Bethany, Elisha and Emily - cant wait to see them again! So I think I've caught up now! Will post some photos later when I've transferred them from my mobile to the computer! xxxx

2 comments:

robertswayze said...

It was certainly nice reading your post...thanks for sharing your thoughts and experiences with us...well i'd also like you to drop by my blog on Birthday Cards sometimes and check out all that i've posted there!!!

Anonymous said...

Wow, busy busy busy! lol. im glad everything is Ok. 63 emails! you've got alot to read, one of them is from ME! Or could be 2! You dont have to reply cos i gotta send the package tommorow to arrive on time. Oh no, i didnt send James a birthday card and present. Please say that i said Happy Birthday! (for when it was his birthday, today or the other day?)

I love reading your posts! They are great! hehe
Love 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!