Lewis Jeynes: Home again!

Friday, January 12, 2007

Home again!

Hello! Well we came home this afternoon. It was very scary, soooo much responsibility, but here we are, at home! Lewis was sooooo tired today! He was up at 5.30am and didnt manage a nap today so no wonder he was so ready for bed! He had his old tube taken out and his new 'silk' tube put in today (he was not happy about that, but its done and dusted now!). He's upstairs now in bed, all plugged in to his 'infinity pump' with his milk going down his tube to his tummy to fill him up! Imagine that ... eat while you sleep lol! I have had the most relaxing bath and now I am also very very ready for bed!! Sooo tired! We are on 'home leave' from hospital so that we can go straight back to ward 31 at any time over the weekend if we are worried. All being well, we have to go back to hospital for ward rounds on Monday morning and then we will be discharged. So fingers crossed the weekend will go well! I did have a few hiccups with the new tube as the syringes I was using for Lew's medicines dont fit it so I had to go and find syringes that fit! But I think I'm all sorted now ... fingers crossed! I dont think we've got anything planned tomorrow - just relaxing hopefully! Although my dad (who is visiting from London) wants to go and buy a coat cos he's so cold. It is soooo windy here at the moment, I think Lew and I were better off in hospital this last 2 weeks out of this horrid horrid wind! Thank you to everybody for our lovely cards and presents and beautiful flowers (I had the most beautiful roses from Angela who visited all the way from Cardiff!!!). Lewis has a great selection of cuddly toys to put on the end of his bed. I've added some photographs from our recent stay in hospital so please do check them out!

8 comments:

Jason Paul Tolmie said...: Manf.......Daddy has so many coats, all long, thick and dark. Why didn't he bring one? Oh, it looks as though I have just described something else that would keep you warm if you wrapped yourself in it;)

Thinking of you guys.

I do hope Bob the Builder didn't frighten Lewis;)

Jasonxx; 14 January 2007 at 09:24
Samantha Tolmie said...: Hello!

I will send thank you cards for all Lew's fab presents, once I get myself sorted! You know I still havent given out my wedding thank yous to everybody yet hahaaaaaaaaa!

Daddy is going home tomorrow as he is ill. He had diorrhea on the bathroom floor!!!

And he told us his story about getting banned from the casino! What a nutter!

Love Smnth xxx

PS Lew lurved Bob!; 14 January 2007 at 18:05
Lawse x said...: hey

so happy to catch up on all your recent blogs and hear that u came home fri afternoon

thinking of u all lots, not been able to access your blog this past week.. but its the first thing i did when i got back in tonight... been wondering how things are etc.

lifes been mad, and i've got my own problems with my nan being in hospital etc, but hopefully this weekend has gone well for you all, and hopefully Lewis will be discharged 2morro.. *fingers crossed*

take care,
laura x; 14 January 2007 at 21:02
Lily King said...: Hi Sam,
Good to hear that you are home, and thanks for thinking of us xxx
Had Bethie's birthday yesterday, can't believe she is three! Will email some photos.
When do you find out about the dystonia etc.? Will be thinking of you.
Love,
Lil; 15 January 2007 at 00:49
Lawse x said...: hi

hows things?; 16 January 2007 at 18:34
Lawse x said...: :S

no updates since fri... and its thurs.. im getting worried

hope your all ok
lawse x; 18 January 2007 at 09:46
The Pettifers said...: Are you sure poor old daddy really wants all the world to know he did diarrhoea on the floor??!!! Remind me never to do anything mortifying at your house! In particular I must advise you NEVER to refer to the bodily functions of your mother in law on this website, as this would send her almost mad with embarrassment. oooooo an evil idea is dawning.....lol

Looking forward to seeing you guys this weekend! Hope things are all going well.

Lots of love

Wendy; 18 January 2007 at 23:24
Samantha Tolmie said...: ... hello sorry we havent updated for ages, been very very busy ... will update now!!

Lawse, very sorry to hear your gran is poorly - hope she is feeling much better very soon xxx; 19 January 2007 at 12:42

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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.

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