Day +216 (Thurs 10th Sept)
Hi everyone. Hope you have all had a good day, as we have here! The sun has shone and we have filled our day with activities!
Ella had a good night with Kirsty looking after her every need, which meant that I slept too. What a difference it makes when you are well rested. Having said that, we had to peel Ella off her bed to get her into the bath this morning. A bit of bribery was needed, but she was all washed and ready by the time Emily came at 11.00am. In fact, Ella sat out in the chariot for her lesson today, which made it much easier for her to write when she needed to. She is really growing in confidence as each day goes by and I’m sure it won’t be long before she is reading independently again.
Reg arrived just as they finished and he brought with him all the makings of wraps and salad…..which Ella helped to make. Before we knew it Liz arrived ( teacher) to do some maths. Ummm….that didn’t go down too well. Ella was flagging a little, but we managed. Then it was straight down to physio for a long walk and a game of ‘hanging monkeys’. I think by the end of the 2nd game Ella wanted to throw the monkeys through the nearest window…..she has to stand every time it’s her turn and she’s not too keen on that. But once again we got to the end and then headed to the shop for some treats.
Our last activity was a real act of defiance. We made window decorations with Lorraine( play specialist) AND stuck them on the window!! I heard from Nicola, who lives next door to us on the unit, that she has been asked to de-clutter their room, so we were wandering if we would be next…..it will need to be a brave person who asks us all to do that!
Right now Ella is asleep and I am watching TV. Hoorah! Reg worked his magic on the ariel and we are back in business. We heard more TV news today….we may be getting our TVs in a few weeks time. I’m not going to hold my breath, but you never know….Santa may have them hidden somewhere?
I haven’t got any photos for you today but I hope you liked yesterdays? I’ll see what I can do tomorrow.
One last piece of news….going back to bathtime today. Ella had 2 bath bombs in there with her. A yellow one and a pink one, which managed to weld themselves to the bottom of the bath. I have been praying all day that the mess would go un noticed, until I could get time to clean it off. Anyway, it’s off….. we can all sleep with a clear conscience now.
Night night from we two.
Lots of love and thanks for all your prayers and loving support.
Ella and Annettexx
Thursday, 10 September 2009
Wednesday, 9 September 2009
Day + 215 ( Weds 9th Sept )
Hi. Sorry that it has been so long since we last spoke to you but I have been back in Southport for a few days. Anyway I’m back now so we can catch up on news for the next few days. I thought I’d give you an update on the new Uggs…..they arrived here on Friday. Ella is delighted with them and so is Dr Wynn. He took a photo of them to show his daughter!
I know that Ella has had a few comfortable days. Getting used to the increased ‘lock out’ time on her pain control has been difficult at times, but she is getting there slowly. Her body clock is programmed to having certain things at certain times, and undoing that is very challenging for her. She is being an absolute star though, as usual, although it doesn’t always feel that way in the early hours of the morning.
There have been great discussions about how to deal with the GVH. Dr Wynn and his team have decided that they are going to use thalidomide to combat the symptoms, starting today. There has been a lot of positive news about using this drug in other transplant centres, including Great Ormond St.
When I arrived today Rachael and Sophie had already settled in and Sally had left for a well earned few days rest. Ella was delighted to see her little cousin of course. She has begun to chatter now, in English rather than ‘Double Dutch’ which Ella hasn’t heard before. Ella was looking forward to feeding her as well, but Sophie had other ideas about that. She wanted to sit on the bed and play at being a ‘big girl’ rather than be the baby. Still, she made us all laugh when she managed to balance Ella’s new bath toy on her head and smile for the camera at the same time !!
When they had left for home it was time for us to go down to physio, so Andrea took us along. Ella worked really hard again, with her standing and walking. In fact, as a big treat she was allowed to take a look at the new hydro therapy pool, which was being tried out today by some of the staff. I don’t think they were too pleased at being watched, but we really enjoyed it…..it was a real change for Ella! We had a short trip out later on as well, thanks to Andrea. It makes such a difference to Ella’s day when she can get off the unit and have look around the place. We walked down to the entrance to sniff the fresh air….although we can’t go outside……then we made our way back via the restaurant.
( more money!!!!!!!!!!!) We can’t go in there together either, but at least we can sniff that too.
Right now the night staff have taken over and Andrea and her team have gone home. They all work so hard to make the children comfortable and loved. Ella loves them all to bits and so do we!!!
I’m writing while Ella is asleep. She crashed about 7.30pm tonight, leaving me to watch Billy Elliot on my own. Actually that probably wasn’t a bad thing, as the language is rather blue. (I love the film though, don’t you? Especially when he makes that giant leap at the end… it always makes me cry.)
I’m going to finish off for tonight and find my PJ’s. For some reason I’m not tired yet, so I may even watch another film. I can’t watch TV …….there isn’t a signal. Still, Reg is coming tomorrow so maybe he can sort it out for us.
Night night then to everyone and lots of love. We send you our thanks for all your prayers and loving support.
Ella and Annette xx
PS Hi Sue, thanks for your message. Glad to hear you had a super holiday. Missing you too, but I know that 6N are in the very best hands.x
Hi. Sorry that it has been so long since we last spoke to you but I have been back in Southport for a few days. Anyway I’m back now so we can catch up on news for the next few days. I thought I’d give you an update on the new Uggs…..they arrived here on Friday. Ella is delighted with them and so is Dr Wynn. He took a photo of them to show his daughter!
I know that Ella has had a few comfortable days. Getting used to the increased ‘lock out’ time on her pain control has been difficult at times, but she is getting there slowly. Her body clock is programmed to having certain things at certain times, and undoing that is very challenging for her. She is being an absolute star though, as usual, although it doesn’t always feel that way in the early hours of the morning.
There have been great discussions about how to deal with the GVH. Dr Wynn and his team have decided that they are going to use thalidomide to combat the symptoms, starting today. There has been a lot of positive news about using this drug in other transplant centres, including Great Ormond St.
When I arrived today Rachael and Sophie had already settled in and Sally had left for a well earned few days rest. Ella was delighted to see her little cousin of course. She has begun to chatter now, in English rather than ‘Double Dutch’ which Ella hasn’t heard before. Ella was looking forward to feeding her as well, but Sophie had other ideas about that. She wanted to sit on the bed and play at being a ‘big girl’ rather than be the baby. Still, she made us all laugh when she managed to balance Ella’s new bath toy on her head and smile for the camera at the same time !!
When they had left for home it was time for us to go down to physio, so Andrea took us along. Ella worked really hard again, with her standing and walking. In fact, as a big treat she was allowed to take a look at the new hydro therapy pool, which was being tried out today by some of the staff. I don’t think they were too pleased at being watched, but we really enjoyed it…..it was a real change for Ella! We had a short trip out later on as well, thanks to Andrea. It makes such a difference to Ella’s day when she can get off the unit and have look around the place. We walked down to the entrance to sniff the fresh air….although we can’t go outside……then we made our way back via the restaurant.
( more money!!!!!!!!!!!) We can’t go in there together either, but at least we can sniff that too.
Right now the night staff have taken over and Andrea and her team have gone home. They all work so hard to make the children comfortable and loved. Ella loves them all to bits and so do we!!!
I’m writing while Ella is asleep. She crashed about 7.30pm tonight, leaving me to watch Billy Elliot on my own. Actually that probably wasn’t a bad thing, as the language is rather blue. (I love the film though, don’t you? Especially when he makes that giant leap at the end… it always makes me cry.)
I’m going to finish off for tonight and find my PJ’s. For some reason I’m not tired yet, so I may even watch another film. I can’t watch TV …….there isn’t a signal. Still, Reg is coming tomorrow so maybe he can sort it out for us.
Night night then to everyone and lots of love. We send you our thanks for all your prayers and loving support.
Ella and Annette xx
PS Hi Sue, thanks for your message. Glad to hear you had a super holiday. Missing you too, but I know that 6N are in the very best hands.x
Thursday, 3 September 2009
Day +209 ( Thurs 3rd Sept)
Here we are again….in dark, cold and rainy Manchester. How the nights are drawing in? It really is like the North Pole here. The rain batters down on the atrium roofing and we can hear it, even in the unit.
Just a short letter tonight about our very good day. Ella has worked really hard at her school work, both with Emily this morning and with her new teacher Liz, this afternoon. Liz came to do a short assessment of where Ella is up to, and when she comes back tomorrow afternoon she will have some ‘proper’ work to do. Emily concentrated on Ella doing some reading today and she was really pleased with Ella’s response.
We went down to physio this afternoon too, after a couple of false starts. Today, Ella wore her UGG boots ( last years’ model) to help her to stand more steadily, and they did the trick. She was able to stand at the table for a good 5 mins to play a game with me, which was great to see. We topped that off with a quick visit to the shop again and then back for a snooze again.
I have got something to look forward to tomorrow……Ella is going to wash my hair. I sort of promised her that she could do it while she was having hers done today. We ran out of time today, so I think tomorrow will be ‘d-day’. I’ve been trying to work out the best way to go about it, how to fit us all in the bathroom, do the job and not end up with us all soaked. Still, it will be fun what ever happens.
Ella is sleeping peacefully, the night staff have taken over and I am watching telly and writing. It’s great to be sat here actually WATCHING a real programme!!!! I know that we should be able to entertain ourselves, like they did in ‘the old days’ before TV, but it’s such a relief to have a ‘grown up’ distraction whilst Ella sleeps.
I’m going to finish now and send you lots of love from us here, and all our thanks for your prayers and support. We haven’t heard much news from you lately. Don’t forget us will you?
Ella and Annette.xx
Here we are again….in dark, cold and rainy Manchester. How the nights are drawing in? It really is like the North Pole here. The rain batters down on the atrium roofing and we can hear it, even in the unit.
Just a short letter tonight about our very good day. Ella has worked really hard at her school work, both with Emily this morning and with her new teacher Liz, this afternoon. Liz came to do a short assessment of where Ella is up to, and when she comes back tomorrow afternoon she will have some ‘proper’ work to do. Emily concentrated on Ella doing some reading today and she was really pleased with Ella’s response.
We went down to physio this afternoon too, after a couple of false starts. Today, Ella wore her UGG boots ( last years’ model) to help her to stand more steadily, and they did the trick. She was able to stand at the table for a good 5 mins to play a game with me, which was great to see. We topped that off with a quick visit to the shop again and then back for a snooze again.
I have got something to look forward to tomorrow……Ella is going to wash my hair. I sort of promised her that she could do it while she was having hers done today. We ran out of time today, so I think tomorrow will be ‘d-day’. I’ve been trying to work out the best way to go about it, how to fit us all in the bathroom, do the job and not end up with us all soaked. Still, it will be fun what ever happens.
Ella is sleeping peacefully, the night staff have taken over and I am watching telly and writing. It’s great to be sat here actually WATCHING a real programme!!!! I know that we should be able to entertain ourselves, like they did in ‘the old days’ before TV, but it’s such a relief to have a ‘grown up’ distraction whilst Ella sleeps.
I’m going to finish now and send you lots of love from us here, and all our thanks for your prayers and support. We haven’t heard much news from you lately. Don’t forget us will you?
Ella and Annette.xx
Wednesday, 2 September 2009
Day +208 (Weds 2nd Sept)
Hi and welcome back to us here. It is around 9.30pm and guess what? I’m watching telly!!! Admittedly the picture is breaking up, but nevertheless it beats a magnolia wall any time. Actually the picture has been good all day, but tonight the monsoon season has begun here and I think that has a lot to do with it. Anyway, on to our news.
We have had a very good day! We had a busy night, with what seemed like no sleep at all, but we survived and were still smiling at the end of it. In fact Ella was in the bath at 10.30am, with Emily here as well ( teaching assistant) ready to do some work, when Ella was back in bed. She did some writing and listened to a couple of stories…..slow beginnings, but after many weeks of not feeling up to joining in she did very well. I made myself scarce and let Emily take over for half an hour. I know Ella would have looked for sympathy if I had stayed. Tomorrow….more writing and a little reading.
Auntie Margaret and Reggie arrived at lunch time, just in time for Ella to direct operations about the wraps she was making for their lunch. ( I’d popped to Tesco while Emily was in). She really is in her element again. As soon as that pinny goes on she steps up a gear!
Ella couldn’t wait to give Reg his birthday presents, even though they are a day early, and of course he made a big fuss about opening them. As you can see from the photos….smiles all round.
We all went down to physio after lunch. Ella wasn’t too impressed with the exercise, but her loyal and devoted fan club cheered her on every time she headed the ball on the Wii. We made a quick escape to the shop for a few treats and then back to have a well earned snooze.
Dr Wynn came just as Ella’s tea arrived and just as she was sat on the potty. ( we are excellent multi taskers aren’t we girls) and said he is pleased with her yet again. They are going to increase the ‘lock out’ time on her PCA to an hour…he is very pleased with how the pain relief is working at the moment. Ella chatted to him about all kinds of things, including food , and then they got onto his children and then discussed her new UGG boots…..which Mummy has bought today. He even checked out the photo of them on my phone! He offered to take Ella down to physio tomorrow for a game on the Wii. He’s bitten off a lot if they have a bowling match.
I’m going to finish now for the night and get this posted off. My early night last night didn’t happen and if I carry on much longer it won’t tonight either will it?
So, night night to everyone, lots of love and our usual thanks for all your support and loving prayers.
Ella and Annettexx
PS We hope you all have a really good day as you get back to school. Special love to all my friends at St John’s, as you begin a new year. It seems very strange not to be there too.x
Hi and welcome back to us here. It is around 9.30pm and guess what? I’m watching telly!!! Admittedly the picture is breaking up, but nevertheless it beats a magnolia wall any time. Actually the picture has been good all day, but tonight the monsoon season has begun here and I think that has a lot to do with it. Anyway, on to our news.
We have had a very good day! We had a busy night, with what seemed like no sleep at all, but we survived and were still smiling at the end of it. In fact Ella was in the bath at 10.30am, with Emily here as well ( teaching assistant) ready to do some work, when Ella was back in bed. She did some writing and listened to a couple of stories…..slow beginnings, but after many weeks of not feeling up to joining in she did very well. I made myself scarce and let Emily take over for half an hour. I know Ella would have looked for sympathy if I had stayed. Tomorrow….more writing and a little reading.
Auntie Margaret and Reggie arrived at lunch time, just in time for Ella to direct operations about the wraps she was making for their lunch. ( I’d popped to Tesco while Emily was in). She really is in her element again. As soon as that pinny goes on she steps up a gear!
Ella couldn’t wait to give Reg his birthday presents, even though they are a day early, and of course he made a big fuss about opening them. As you can see from the photos….smiles all round.
We all went down to physio after lunch. Ella wasn’t too impressed with the exercise, but her loyal and devoted fan club cheered her on every time she headed the ball on the Wii. We made a quick escape to the shop for a few treats and then back to have a well earned snooze.
Dr Wynn came just as Ella’s tea arrived and just as she was sat on the potty. ( we are excellent multi taskers aren’t we girls) and said he is pleased with her yet again. They are going to increase the ‘lock out’ time on her PCA to an hour…he is very pleased with how the pain relief is working at the moment. Ella chatted to him about all kinds of things, including food , and then they got onto his children and then discussed her new UGG boots…..which Mummy has bought today. He even checked out the photo of them on my phone! He offered to take Ella down to physio tomorrow for a game on the Wii. He’s bitten off a lot if they have a bowling match.
I’m going to finish now for the night and get this posted off. My early night last night didn’t happen and if I carry on much longer it won’t tonight either will it?
So, night night to everyone, lots of love and our usual thanks for all your support and loving prayers.
Ella and Annettexx
PS We hope you all have a really good day as you get back to school. Special love to all my friends at St John’s, as you begin a new year. It seems very strange not to be there too.x
Tuesday, 1 September 2009
Day 207 ( Sept 1st Tues )
Hi, we are here again, ready to tell our latest news from Manchester. Hope you all had a really fab long weekend and that work wasn’t too much of a shock!!
As you know Daddy has been here for a couple of nights, followed by Sally on Sunday and Monday and now I’ve arrived back until the end of the week. Honestly, I just don’t know how the weeks fly by without us even noticing sometimes.
I know that Ella has had a comfortable weekend. She has been quietly watching films (on the new TV screen) and Daddy brought the Wii back, but unfortunately he couldn’t get it tuned in….so there was no sound or colour on the games. Mummy tried too, with no luck, so I don’t think I’ll be any better, do you? In herself Ella has been a lot more cheerful of late, but she still has the rash from last week, so she has restarted one of the anti-rejection drugs to see if that will sort the problem out.
I’ve put some snaps on for you to enjoy. The first 2 are from last week actually, when Ella went along to work with the OT in their d’part. She really enjoyed it and was looking forward sooooo much to going again today, to make cheesecake. Of course there was a change of plan, things are never that straight forward are they, and Joanne ended up coming in here to make cornflake cakes instead. Ella was disappointed to begin with, but Sam was here too and that eased the situation a lot. They had a super time together….Ella being the real big sister. I would love to put captions to the photos, but I guess you can add your own, the looks on their faces say it all don’t they?
I’m hoping the teachers start again very soon. Ella is ready for some really positive distractions now. There are only so many times you can make cakes!!
Sally and Sam left just before teatime and now it is just after 9.00pm. Ella is fast asleep and I’m going to go along shortly to buy a cuppa and then settle down for some sleep…..I hope. So we will speak tomorrow and let you know how we coped with all Weds adventures!!
Nite nite and lots of love to everyone. Thankyou for your loving prayers and support, as always.
Ella and Annette.xx
PS A special hello to Libby, Hannah and Grace. It was great to see you on Sunday. Did you get your new shoes?x
PPS Reg and Auntie Margaret are coming tomorrow with an ariel for the TV ( thanks Reggie) so we are hoping Reg can work his magic and get it tuned in.
Hi, we are here again, ready to tell our latest news from Manchester. Hope you all had a really fab long weekend and that work wasn’t too much of a shock!!
As you know Daddy has been here for a couple of nights, followed by Sally on Sunday and Monday and now I’ve arrived back until the end of the week. Honestly, I just don’t know how the weeks fly by without us even noticing sometimes.
I know that Ella has had a comfortable weekend. She has been quietly watching films (on the new TV screen) and Daddy brought the Wii back, but unfortunately he couldn’t get it tuned in….so there was no sound or colour on the games. Mummy tried too, with no luck, so I don’t think I’ll be any better, do you? In herself Ella has been a lot more cheerful of late, but she still has the rash from last week, so she has restarted one of the anti-rejection drugs to see if that will sort the problem out.
I’ve put some snaps on for you to enjoy. The first 2 are from last week actually, when Ella went along to work with the OT in their d’part. She really enjoyed it and was looking forward sooooo much to going again today, to make cheesecake. Of course there was a change of plan, things are never that straight forward are they, and Joanne ended up coming in here to make cornflake cakes instead. Ella was disappointed to begin with, but Sam was here too and that eased the situation a lot. They had a super time together….Ella being the real big sister. I would love to put captions to the photos, but I guess you can add your own, the looks on their faces say it all don’t they?
I’m hoping the teachers start again very soon. Ella is ready for some really positive distractions now. There are only so many times you can make cakes!!
Sally and Sam left just before teatime and now it is just after 9.00pm. Ella is fast asleep and I’m going to go along shortly to buy a cuppa and then settle down for some sleep…..I hope. So we will speak tomorrow and let you know how we coped with all Weds adventures!!
Nite nite and lots of love to everyone. Thankyou for your loving prayers and support, as always.
Ella and Annette.xx
PS A special hello to Libby, Hannah and Grace. It was great to see you on Sunday. Did you get your new shoes?x
PPS Reg and Auntie Margaret are coming tomorrow with an ariel for the TV ( thanks Reggie) so we are hoping Reg can work his magic and get it tuned in.
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