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Tuesday, April 03, 2007

Surviving

So it's Tuesday, we survived the weekend, but had to go back to hospital yesterday evening with Lew, but more about that later. Saturday we had a lovely day. In the morning we did the usual stuff. James went shopping with Steve (usual stuff? lol!) and Lew and I had a lie in - we are getting good at these lie-ins! Then James gave Lew his bath while I did my exercises. Then I took Jodie home - bless her she had to sit and watch me do my 30 minutes exercise DVD! After that, we got ready to go to Natasha's birthday party at Conisbrough Castle! Lew had fallen asleep on the sofa, but he woke up as we were putting him in the car. It was a beautiful sunny day, although very windy. We arrived at the party and it was great to see all our friends and neighbours, but we were a bit worried as Lew was having trouble breathing properly. All the children were in costumes (including Lew!) and the Castle provide costumes for adults too which we were glad of because its REALLY cold in that Castle! We were taken on a tour of the Castle, but as Lew was not 100% and there are lots of steps, James stayed in the party room with Lew while we went for the tour. It was very interesting, and the children loved to wander round the Castle and hear about what happened there hundreds of years ago. It was fun for the grown ups too to imagine how miserable life might have been!! Especially going to the toilet!!! We came back to the party room for the food and games and although Lew couldnt join in the eating, he was happy to sit on Daddy's lap at the table with all the other children. While the children were eating, the grown ups got a much needed hot cup of tea/coffee to warm us up after our trip in the Castle!
After the food, we played party games. Lew joined in pass the parcel although he wasnt able to join in musical chairs or musical statues, but he enjoyed instead playing with Nikita and the other children as they were 'out' in the games. Natasha had a wonderful time I think, as did all the children, particularly her brother Ilya and Olya and Chris provided us all with a great afternoon of fun and entertainment so thank you all for a lovely time. We came home in time for me to prepare dinner as Teresa and Richard, Van and Steve (with Nikita and Jay) were coming to eat with us. James put Lew to bed while I finished off preparing our lasagne.
No idea where this photo came from!!! Just after 7pm our guests arrived and we had a lovely evening. The children enjoyed staying up late as its school holidays now, and us grown ups enjoyed eating and drinking and chatting. Around 10pm it was time for everyone to go and so James, Samuel and I went to bed after a busy day! Lew had a difficult night, lots of coughing and choking, and he was also sick, so in the morning we were very tired. So another lie-in was required! There was no football for James (I think half the teams in Doncaster had gone to the Millenium Stadium to watch THE game!) so Lew sat with him (watching football build up I am sure!) while I popped across to Munmun's for a cup of tea with her and Olga and the children. Just before lunch, James, Lewis and I went to Asda to get some bits and pieces for lunch and for the week, and then around 1pm (just in time for the football!), Yolanda, Stephen, Noami, Joshua and Joel arrived. It was wonderful to see them as we havent been able to see much of each other lately with being so busy at both ends, but it was great that they all could come over. The children enjoyed playing on the trampoline and we had a 'picnic' lunch at the table so the children could come and pick at the food in between spending time in the garden. A little later, Munmun and Livia came over to join us and although Livia was shy at first, she soon joined in playing with the older children! Lewis was very happy to sit indoors with Daddy and Stephen and watch Doncaster and Bristol battling it out for some trophy or other (!!!). We knew when Doncaster had scored by the cheers, but we didnt know Bristol had also scored to equalise until we popped inside to see how everything was going! Later in the afternoon, Steve, Van, Nikita and Jay came over to add to the lovely afternoon. Steve and Richard had been doing a carboot sale in Oldcotes since some very early hour of the morning!!! Thankfully, the football cheer was heard a little later and DONCASTER ROVERS WON wahey!!! What a great occasion for us all! Well done Rovers! A little later Olga, Natasha and Ilya popped in to play and have a cup of tea as well so it was a busy afternoon indeed! But lovely for us all to spend time with our friends and for Lew to spend time with so many children which he loves so much. As Yolanda and Stephen had a long drive home, they had to leave around 4pm but we are hoping to arrange another day when they can come over and spend the whole day, when the weather is lovely and warm again.
The rest of our visitors left around 5.30pm and we put Lew to bed around 6pm (we've been getting him to bed earlier as his breathing is much more laboured as he gets tireder - is tireder a real word?!) and then the rest of us got ready for a relaxing evening and early bed. Sunday night Lew had another difficult night with his breathing. Monday morning we were up and out by 10.15am, and we all went to Brockholes Farm - Samuel, Lewis and I, and we took Munmun and Livia too. We met Marie, Daniel and Sian there, and also Lizzie and Mavrick. Another beautiful sunny day, but that wind was cold!!!
Marie's son Daniel is an absolute natural with the children and they all got on really well with him and with Sian.
Unfortunately (for Mavrick!) Lizzie had an appointment at 1pm so couldnt stay too long, but it was lovely to spend some time together and for the children to see each other too. We also got to see the Easter Bunny at the Farm and he gave each of the children an Easter Egg! As Lew cant eat regular food, we gave his egg to Mavrick (as Mavrick is only 2, he didnt get a ticket to see the Bunny booo!) Livia chose a Fifi egg and ate it all while we were at the Farm! We saw lots of cute animals and the children went on some of the rides including the tractor barrel ride!! After we had finished looking round the Farm, we went to the cafe for lunch and a had a relaxing sit down and a chat while we ate. Then it was off to the RSPCA Sanctuary to visit the animals. It is very sad, the reasons why some of the animals are there, but thankfully most of them were reserved to be taken home so that was quite encouraging. There was one cat who had been thrown from a moving car, but he was waiting to be taken to a new home so a happy ending there. There was a very affectionate border collie who was in the 'not for adoption' section - I think they have to be assessed and checked over before they can be adopted. It was very sad to see such a very intelligent dog, so very desperate for a cuddle, in her little cage, but hopefully she will find a new home soon. She had one brown eye and one blue, and was gorgeous. I assume she was a she, but she might have been a he, but anyway, lovely! Lew loved to see the cats and the kittens and the dogs and the puppies and of course they have rabbits and mice and gerbils too! On the way back home, after saying goodbye to Marie, Daniel and Sian, Livia fell asleep. Lew's breathing was getting much worse and we were all quite worried by it. We took Munmun and Livia home and then I was so concerned about how much worse Lew's breathing had got that I rang the hospital and went straight over. They checked Lew over again, his oxygen saturation was low 90s which is low for Lew (its normally 100%) but it wasnt low enough for concern - if its constantly 80s then they would be worried. They checked his chest again and it was clear so they think he has a viral infection which is causing the laboured and shallow breathing and so he is now on antibiotics in the hope that no infection will spread to his chest. When Lew fell asleep, his breathing was so normal, which is why James and I are worried its to do with his whole muscle deterioration problem as when he is awake his muscles twitch and spasm constantly but when he is asleep he doesnt twitch at all. However, we fully appreciate that Doncaster is doing everything it can for us and has done everything it can for us, and that there is nothing else really to be done (aside from keeping Lew reasonably stable) until we go to Great Ormond Street in 4 weeks time. So we came back home with antibiotics and put Lew straight to bed. He had a restless night again, but as he's still in bed now (I'll get him up in a minute - its 11.20am) then at least we know he's catching up on rest. We have to go back to the hospital this morning to take a urine sample (clean catch! arrgghhh!) and to collect his prescription for more epilim.

2 comments:

Anonymous said...

awww hope everything is Ok. glad u had fun at the castle :) Lewis looked well cute in his outfit, bless him. yes it is really sad about the animals who are with RSPCA but at least they are in RSPCA's care and hopefully find somewhere safe to live. It must be hard for the animals.

Anyway speak 2 u soon
take care
love Sian XxxX

Anonymous said...

I am sooo glad that you enjoyed Natasha`s birthday party! And thank you so much for coming, i know it wasn`t easy with Lew being so poorly. And Natasha just loves that handbag that you gave!

Hoping so much that Lewis will be stable until his appointment in London. Brave little fella!
Olga

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!