Day +175 ( Frid 31st)
By the time you read this update it will be the 1st of the month, so ‘white rabbits’ to everyone and welcome back to Manchester from Ella and Nanna.
We have had a really good day again today, after a comfortable night. What more can I say? Actually I’d got out of the way of waking every hour or so at home, so that by the time 7.00am came I was completely out for the count. In fact I missed the change over of night staff to day staff, which isn’t like me at all. Ella was awake of course, so I had to pull it together ‘pretty darned quick’, I can tell you!
This morning we tried to have an early start….but it didn’t quite work out as we expected, and it took until 11.00am to get us both washed and dressed. One of the problems was the shower in Ella’s bathroom. We are now allowed to use ‘the facilities’….the health and hygiene person has decided that our germs are ‘friendly family germs’, and only what Ella would come into contact at home anyway. I was quite looking forward to using the bathroom, instead of the dormitory, but no one had warned me that I would need 6 NHS towels to soak up the overflow of water from the shower, as it cascaded down the nice new paintwork, and out under the bathroom door!!! Needless to say a plumber was called…..but didn’t arrive.
Lorraine did arrive though….the play specialist….to work with Ella on a window decoration. They made a butterfly, which is now fluttering across the window which overlooks the outpatients, and faces the ‘top brass’ offices. In fact Sue ( ward manager) arrived just as it had been put up, and loved it, and said that ‘we need more of this sort of thing to brighten the place up’. She was making the comment to right family wasn’t she? Come the end of next week I can see a whole squadron of butterflies up there!
We went down to play on the Wii again this afternoon, which was a success of course, and then we hit the shop, with Ella buying lots of drinks…..’for later Nanna’….
(One of Ella’s favourite things to do is to drink, at the moment. We have to try and keep it under strict control of course, but the shelf in her room looks like a cocktail bar at the moment, with all kinds of soft drinks on there.)
I had to work very hard to keep Ella awake after that, to play with the OT, Liz, who was our next visitor. She did have a snooze later, while I popped out for something to eat, and at last it was bedtime, and we could get down to watching our film!!
‘Angus, Thongs and Perfect Snogging’. Ummmm…. it did come recommended…a little racy in places…. but quite all right really. Not half as bad as the soaps.
And now? She sleeps….following another one page only story! I seem to have the technique in that department.
We are looking forwards to Sam coming tomorrow. (He is coming with Daddy and then I’ll take him home.) We are going to devote some time in the morning to choosing what to play/make/do with him, then we are all ready and waiting! Ella especially asked if he could come….she really misses him, and all the rest of the gang too.
We are going to close now. I’ll catch up again on Sunday.
Night night and wishing you all a lovely weekend. Lots of love and thanks for all your prayers and continued support.
Ella and Annette.xx
Friday, 31 July 2009
Thursday, 30 July 2009
Day +174 ( Thurs 30th July)
Hi again everyone!!!!!!! I bet you thought we had given up didn’t you? WRONG!!!!!!!!We are back……….. I can’t believe that it’s 10 days since I last filled you in, if you’ll excuse the expression. Such a lot has happened in that short time and it would be daft to try to catch up on every detail, so I’ll just give you all the main points shall I?
Rachael has, and still is, recovering very well from her operation. She has been on light duties for a few weeks….so we have been doing a lot of changing over here in order to help her out at home.
Sally has survived ( very well I might add ), a broken engagement, with the help and support of all her family and friends.
I’ve had a horrid cold and have had to stay at home for a few days. No runny noses allowed in here!!!!!!!!
Now, on to the important one …..Ella!
There have been talks and meetings, and meetings and talks, about how best to meet Ella’s needs and we seem to have a winning formula at last.
I told you a few weeks back that her day was going to be more structured and that her self motivation was to be worked on? Well that has begun in earnest now and Ella is responding to it very well. This has been coupled with an overhaul of the pain relief situation …which has always been an issue…..and as she is becoming more confident that she can have the doses when she wants them, they are becoming less frequent. Her little mind is being more and more distracted by positives and she is beginning to enjoy her days again. She has been down to the physio department this week, to play on the sports Wii and yesterday she beat Mummy in bowling and today she beat me! Muriel came in this afternoon to help Ella to draw up a timetable….which is now on the wall, surrounded by cut out butterflies, so that Ella knows what is happening and when, but more importantly what is expected and when. I know that she had a lovely day yesterday, with lots of positives, and today has been the same.
It all has to be FUN though, doesn’t it? Not easy after 7 months in hospital, but we are getting there. She is having masses of encouragement, to reassure her that she is getting better, and it’s beginning to work. We actually did some colouring tonight for the Radio Lollipop competition. The first time in months!!!!!!! It was lovely to see her actually engaged in some thing relaxing.
Dr Wynn has been really delighted at her success. He is away next week, but has promised to send her a postcard from Scotland.
Of course there have been difficult times as well, and this week has seen Ella back in theatre to have her line replaced….yet again. This time the line is a temporary one in her groin, which is making life more complicated in some ways, as you can imagine. But the brave little angel has bounced back and is taking it all in her stride.
I’m going to finish now….it’s very late and Ella is asleep, so I’m going to catch a few winks while I can. She has had a ‘stay up’ tonight to watch a film, which I thought would send her to sleep, but actually had the opposite affect. Then she had cravings for some tinned peaches and pears. (Which she got) and then finally I read her The Gruffaloes’ Child. She was asleep after the 1st page. So much for my story telling!!!!!!!!
Anyway, night night to everyone and as usual we send our love and our continued thanks for all your prayers and support.
Ella and Annette.xx
PS Hope all those of you who are going on holiday soon have a super time…lucky ducks!
PS Hope all those of you who have been on holiday have had a super time…lucky ducks!
Hi again everyone!!!!!!! I bet you thought we had given up didn’t you? WRONG!!!!!!!!We are back……….. I can’t believe that it’s 10 days since I last filled you in, if you’ll excuse the expression. Such a lot has happened in that short time and it would be daft to try to catch up on every detail, so I’ll just give you all the main points shall I?
Rachael has, and still is, recovering very well from her operation. She has been on light duties for a few weeks….so we have been doing a lot of changing over here in order to help her out at home.
Sally has survived ( very well I might add ), a broken engagement, with the help and support of all her family and friends.
I’ve had a horrid cold and have had to stay at home for a few days. No runny noses allowed in here!!!!!!!!
Now, on to the important one …..Ella!
There have been talks and meetings, and meetings and talks, about how best to meet Ella’s needs and we seem to have a winning formula at last.
I told you a few weeks back that her day was going to be more structured and that her self motivation was to be worked on? Well that has begun in earnest now and Ella is responding to it very well. This has been coupled with an overhaul of the pain relief situation …which has always been an issue…..and as she is becoming more confident that she can have the doses when she wants them, they are becoming less frequent. Her little mind is being more and more distracted by positives and she is beginning to enjoy her days again. She has been down to the physio department this week, to play on the sports Wii and yesterday she beat Mummy in bowling and today she beat me! Muriel came in this afternoon to help Ella to draw up a timetable….which is now on the wall, surrounded by cut out butterflies, so that Ella knows what is happening and when, but more importantly what is expected and when. I know that she had a lovely day yesterday, with lots of positives, and today has been the same.
It all has to be FUN though, doesn’t it? Not easy after 7 months in hospital, but we are getting there. She is having masses of encouragement, to reassure her that she is getting better, and it’s beginning to work. We actually did some colouring tonight for the Radio Lollipop competition. The first time in months!!!!!!! It was lovely to see her actually engaged in some thing relaxing.
Dr Wynn has been really delighted at her success. He is away next week, but has promised to send her a postcard from Scotland.
Of course there have been difficult times as well, and this week has seen Ella back in theatre to have her line replaced….yet again. This time the line is a temporary one in her groin, which is making life more complicated in some ways, as you can imagine. But the brave little angel has bounced back and is taking it all in her stride.
I’m going to finish now….it’s very late and Ella is asleep, so I’m going to catch a few winks while I can. She has had a ‘stay up’ tonight to watch a film, which I thought would send her to sleep, but actually had the opposite affect. Then she had cravings for some tinned peaches and pears. (Which she got) and then finally I read her The Gruffaloes’ Child. She was asleep after the 1st page. So much for my story telling!!!!!!!!
Anyway, night night to everyone and as usual we send our love and our continued thanks for all your prayers and support.
Ella and Annette.xx
PS Hope all those of you who are going on holiday soon have a super time…lucky ducks!
PS Hope all those of you who have been on holiday have had a super time…lucky ducks!
Tuesday, 21 July 2009
Day +164 (Mon 20th)
Hi and welcome to Manchester.
What can I tell you about today? Ella and I had a night of ups and downs…literally….last night. The result of that has been that Ella has been tired and grumpy.
Dr Wynn popped in early to say that all is well. Certain viruses are down, bloods are ok and as usual the main concern is pain control. We think the pain relief is there….we just need to reassure Ella that it is ok.
She didn’t want to get up and dressed today, but we had our appointment with the physio at 10.30 so we had to make an effort…as you do. Sara and I got her washed and dressed just in time, then it was off to the corridor for a game of skittles. Ella was less than bouncing with joy, but we got there in the end….with a few ‘sit downs’ and plenty of persuasion. She wanted to stay out by the nurses’ station for a while and do some ‘people watching’. Monday mornings are very busy here, as you can imagine, and the distraction worked for a while, but then she became tired and tummy ache took over, so we retired to our room for a snooze. Our precious little girl saw other children, past and present transplant patients, coming and going off the ward….either to clinic, or to go home. She was very brave.
We watched Ben Stiller in the Museum film this afternoon. I thought Ella was asleep but I caught her having a quick peep at it. She is very good at lying absolutely still and pretending to sleep, when actually she is listening to every word and sound….especially if you go to make a move to leave the room! This is one of the reasons why we are pushing to have all her ‘medical talk’ said outside of her hearing. She knows, and sadly understands, far too much. She has staggered one or two of the ‘on call’ Drs at times, by asking for something which little children shouldn’t even know about, let alone worry about.
Daddy brought Sam later this afternoon, for his check up in clinic. He brought Aunty Rachael too! Sam is doing very well and Ella couldn’t wait to give Rachael the picture and chocs. she had made for her. Rachael came armed with 2 pillows from home, to help her be more comfortable, after the operation, while she sleeps. Ummmmm….I think Ella will have different plans about the sleeping bit!
I can’t believe I’m telling you another FB tale, but here we go! I went down to the restaurant at tea time, and had just ordered, when the inevitable alarm started and we were all evacuated. I did a quick call up to Rach and Damian to expect me later…..it was finally an hour later!!!!!! Talk about starving…….
After Daddy and Sam had left we watched Mamma Mia for a while, but I’m afraid the snoozing fairy ‘got’ Ella and I and I have retired gracefully to the dormitory. (There is another lady staying in here too, but I haven’t managed to meet her yet.) I really hope I’m on my own then I can relax a little more and enjoy the chocolate I bought earlier.( it was a reward for standing outside for half an hour earlier. That's fair isn't it?)
Night night and we send you all our thanks for your prayers and support.
Ella, Rachael and Annette.xxx
PS I’m actually sending this on Tues. morning ( but it’s yesterdays’ report….if you know what I mean! I ran out of steam last night.)
Hi and welcome to Manchester.
What can I tell you about today? Ella and I had a night of ups and downs…literally….last night. The result of that has been that Ella has been tired and grumpy.
Dr Wynn popped in early to say that all is well. Certain viruses are down, bloods are ok and as usual the main concern is pain control. We think the pain relief is there….we just need to reassure Ella that it is ok.
She didn’t want to get up and dressed today, but we had our appointment with the physio at 10.30 so we had to make an effort…as you do. Sara and I got her washed and dressed just in time, then it was off to the corridor for a game of skittles. Ella was less than bouncing with joy, but we got there in the end….with a few ‘sit downs’ and plenty of persuasion. She wanted to stay out by the nurses’ station for a while and do some ‘people watching’. Monday mornings are very busy here, as you can imagine, and the distraction worked for a while, but then she became tired and tummy ache took over, so we retired to our room for a snooze. Our precious little girl saw other children, past and present transplant patients, coming and going off the ward….either to clinic, or to go home. She was very brave.
We watched Ben Stiller in the Museum film this afternoon. I thought Ella was asleep but I caught her having a quick peep at it. She is very good at lying absolutely still and pretending to sleep, when actually she is listening to every word and sound….especially if you go to make a move to leave the room! This is one of the reasons why we are pushing to have all her ‘medical talk’ said outside of her hearing. She knows, and sadly understands, far too much. She has staggered one or two of the ‘on call’ Drs at times, by asking for something which little children shouldn’t even know about, let alone worry about.
Daddy brought Sam later this afternoon, for his check up in clinic. He brought Aunty Rachael too! Sam is doing very well and Ella couldn’t wait to give Rachael the picture and chocs. she had made for her. Rachael came armed with 2 pillows from home, to help her be more comfortable, after the operation, while she sleeps. Ummmmm….I think Ella will have different plans about the sleeping bit!
I can’t believe I’m telling you another FB tale, but here we go! I went down to the restaurant at tea time, and had just ordered, when the inevitable alarm started and we were all evacuated. I did a quick call up to Rach and Damian to expect me later…..it was finally an hour later!!!!!! Talk about starving…….
After Daddy and Sam had left we watched Mamma Mia for a while, but I’m afraid the snoozing fairy ‘got’ Ella and I and I have retired gracefully to the dormitory. (There is another lady staying in here too, but I haven’t managed to meet her yet.) I really hope I’m on my own then I can relax a little more and enjoy the chocolate I bought earlier.( it was a reward for standing outside for half an hour earlier. That's fair isn't it?)
Night night and we send you all our thanks for your prayers and support.
Ella, Rachael and Annette.xxx
PS I’m actually sending this on Tues. morning ( but it’s yesterdays’ report….if you know what I mean! I ran out of steam last night.)
Monday, 20 July 2009
Day +163 ( Sun 19th)
Hi, hope all is well with you? We have had a super day, all in all, with lots of highs and hardly and low times.
Last night was quite a peaceful one…no tummy aches although we were up and down sorting out pillows and rearranging the bed etc. When it came to 10.00am this morning and Ella was still snoozing but nurse Ali and I wanted Ella to be up and about by 10.30am. I know the physios don’t work over the weekend but Nannas do. Sooooooo we got her washed and dressed ( kicking and screaming I may add) and off we went for a walk down the corridor.
I think at this point Ella’s determination took over, because we sat out on the corridor for half an hour, whilst Ella put on her jewels and earrings etc, and then when we were on the way back she had a ride in the big arm chair, before sitting on my knee while her bed was changed.
Ella actually wanted to go back to sleep then, but that’s not how it worked out. We watched a film, then another…….then it was dinner time and she helped me to eat my sandwiches etc. Ella was becoming less engaged as the afternoon wore on, so I decided another walk was in order. This time she was less willing, but we set off anyway, with the bribe of a sit down and not walking so far. As it turned out we were still outside, in the corridor, 3hrs later!
We sat by the door for a while, then of course the machines began to bleep, so out came our industrial extension lead, to plug them back into the mains….I don’t know what the matron would have said about that! ( well, I do actually). We ended up by the nurses’ station, with Ella sat on her ‘throne’ watching all the comings and goings on a lazy Sunday afternoon. By the time 8.00pm came, and the staff were changing over, Ella didn’t want to come back into her room. Typical!! We had to bribe her with all sorts to get her back into bed. I think there will be more of the same tomorrow, with a trip out of her room….to who knows where? I’m sure Dr Wynn will be involved .
It’s quite late now and I’m going to get this posted off…in fact I may even post it tomorrow. My eyes are drooping and Ella has finally given in and fallen asleep.
Night night and all our usual love and thanks for your prayers and support.
Ella and Annette.xx
PS You may be wondering about Auntie Rachael’s arrival? It has been delayed until tomorrow, because of problems at OLOL. An extra pair of hands needed at home!
PPS Hi to all my fellow Stewards at AMC. Thankyou for your thoughts.x
Hi, hope all is well with you? We have had a super day, all in all, with lots of highs and hardly and low times.
Last night was quite a peaceful one…no tummy aches although we were up and down sorting out pillows and rearranging the bed etc. When it came to 10.00am this morning and Ella was still snoozing but nurse Ali and I wanted Ella to be up and about by 10.30am. I know the physios don’t work over the weekend but Nannas do. Sooooooo we got her washed and dressed ( kicking and screaming I may add) and off we went for a walk down the corridor.
I think at this point Ella’s determination took over, because we sat out on the corridor for half an hour, whilst Ella put on her jewels and earrings etc, and then when we were on the way back she had a ride in the big arm chair, before sitting on my knee while her bed was changed.
Ella actually wanted to go back to sleep then, but that’s not how it worked out. We watched a film, then another…….then it was dinner time and she helped me to eat my sandwiches etc. Ella was becoming less engaged as the afternoon wore on, so I decided another walk was in order. This time she was less willing, but we set off anyway, with the bribe of a sit down and not walking so far. As it turned out we were still outside, in the corridor, 3hrs later!
We sat by the door for a while, then of course the machines began to bleep, so out came our industrial extension lead, to plug them back into the mains….I don’t know what the matron would have said about that! ( well, I do actually). We ended up by the nurses’ station, with Ella sat on her ‘throne’ watching all the comings and goings on a lazy Sunday afternoon. By the time 8.00pm came, and the staff were changing over, Ella didn’t want to come back into her room. Typical!! We had to bribe her with all sorts to get her back into bed. I think there will be more of the same tomorrow, with a trip out of her room….to who knows where? I’m sure Dr Wynn will be involved .
It’s quite late now and I’m going to get this posted off…in fact I may even post it tomorrow. My eyes are drooping and Ella has finally given in and fallen asleep.
Night night and all our usual love and thanks for your prayers and support.
Ella and Annette.xx
PS You may be wondering about Auntie Rachael’s arrival? It has been delayed until tomorrow, because of problems at OLOL. An extra pair of hands needed at home!
PPS Hi to all my fellow Stewards at AMC. Thankyou for your thoughts.x
Saturday, 18 July 2009
Day +162 ( Sat 18th July)
Hi to everyone and welcome back to Manchester. Ella and I are here on Saturday evening, about 9.00pm and we are trying to get ourselves settled for the night. At the moment with only a little success.
As you may remember, I have been home for a few days to look after Rachael, and her brood, following her stay in hospital. It has been a very busy time but very enjoyable, I must say. A complete change from being here, having four boisterous monkeys chasing around the place all the time, not to mention school and nursery runs. Rachael has done really well and is up and about, almost as usual. She’s not allowed to do anything strenuous for a while yet, but day to day things she is managing now. Sally is there at present, so we have swapped over again.
When I arrived back this afternoon I caught up on today’s news, from Daddy and the nurses, on how Ella has been today, and all the news was great! She had a super morning which included a big walk almost to the end of the unit. Ella looks a lot better as well, even in the 5 days I’ve not been here.
Last Monday Dr Wynn called a case meeting for everyone involved in Ella’s care to attend and give their input. It was very lively and informative and basically said that Ella’s care needs to be specialised in many ways, to make sure that she is pain free and is able to move about the hospital as much as possible, for example to the restaurant or physio gym, whilst still being on her lines. ( there has been some doubt as to whether or not she is allowed off the unit). Since the meeting, things have been tightened up with regard to Ella’s regime during the day. She now has a timetable to work to……times to be up and dressed by, physio appointments, teaching times etc…..in order to restructure her days and build up her self confidence and self esteem. The gastro surgeon was there too and he is going to have another look into her tummy, probably one day next week. In the meantime he is happy for her to continue with little tastes of what she fancies, as it will encourage her bowel to want to start functioning again.
Since Ella has been ‘encouraged’ not to be a nudist any more the problem of comfortable outfits has come into play. Obviously anything snug around her tummy is completely out of the question, so we have resorted to aged 12/13 yrs t.shirts and shorts to keep her going with for the time being. It has been lovely going out to choose her some nice summery things to wear, although like all 8yr olds (going on 18yr olds ) she still has a lot to grumble about if they’re not just right! Ella is such a dear little girl…. it is increasingly more difficult to be cross with her when she argues back..it must seem to her that she has lost control almost everything in her life at the moment.
It has been Jack’s birthday today, he is now 6yrs. We all had a party at Kid’s Play in Birkdale and I made sure to bring Ella a party bag back with me. Of course it included all the usual ‘boy’stuff in it……sweets, airplane kit, bouncy ball and a whoopee cushion! Nurse Rachel fell for that one, when she came in earlier. It brought a smile to Ella’s face for a while, anyway.
I’m just eating a little bit of feta salad at the moment. I’m not really supposed to in the room, but I guess a cold snack isn’t too much to ask, is it? I’ve just been told that the blinds opening onto the corridor, from all the rooms, have to be left open at all times according to the ‘matron’. Wonderful! I mean they are in and out of the room all the time anyway, and know that we will call them the moment we need them!! It makes one wonder why the rooms were fitted with blinds in the first place, doesn’t it?
On a brighter note I would like to say hello to Janet! Hi there, so glad to hear that you are OK and lots of love and best wishes from us all in your new job!
I am going to close now and do some reading to finish my night off. Ella is fast asleep but the machines are beeping so Jo is in and out a lot at the moment. Oh…..spoke too soon….she’s awake. Got to go.
Night night to everyone and we send you lots of love and all our thanks for your loving concern, support and prayers.
Ella and Annette.xx
Hi to everyone and welcome back to Manchester. Ella and I are here on Saturday evening, about 9.00pm and we are trying to get ourselves settled for the night. At the moment with only a little success.
As you may remember, I have been home for a few days to look after Rachael, and her brood, following her stay in hospital. It has been a very busy time but very enjoyable, I must say. A complete change from being here, having four boisterous monkeys chasing around the place all the time, not to mention school and nursery runs. Rachael has done really well and is up and about, almost as usual. She’s not allowed to do anything strenuous for a while yet, but day to day things she is managing now. Sally is there at present, so we have swapped over again.
When I arrived back this afternoon I caught up on today’s news, from Daddy and the nurses, on how Ella has been today, and all the news was great! She had a super morning which included a big walk almost to the end of the unit. Ella looks a lot better as well, even in the 5 days I’ve not been here.
Last Monday Dr Wynn called a case meeting for everyone involved in Ella’s care to attend and give their input. It was very lively and informative and basically said that Ella’s care needs to be specialised in many ways, to make sure that she is pain free and is able to move about the hospital as much as possible, for example to the restaurant or physio gym, whilst still being on her lines. ( there has been some doubt as to whether or not she is allowed off the unit). Since the meeting, things have been tightened up with regard to Ella’s regime during the day. She now has a timetable to work to……times to be up and dressed by, physio appointments, teaching times etc…..in order to restructure her days and build up her self confidence and self esteem. The gastro surgeon was there too and he is going to have another look into her tummy, probably one day next week. In the meantime he is happy for her to continue with little tastes of what she fancies, as it will encourage her bowel to want to start functioning again.
Since Ella has been ‘encouraged’ not to be a nudist any more the problem of comfortable outfits has come into play. Obviously anything snug around her tummy is completely out of the question, so we have resorted to aged 12/13 yrs t.shirts and shorts to keep her going with for the time being. It has been lovely going out to choose her some nice summery things to wear, although like all 8yr olds (going on 18yr olds ) she still has a lot to grumble about if they’re not just right! Ella is such a dear little girl…. it is increasingly more difficult to be cross with her when she argues back..it must seem to her that she has lost control almost everything in her life at the moment.
It has been Jack’s birthday today, he is now 6yrs. We all had a party at Kid’s Play in Birkdale and I made sure to bring Ella a party bag back with me. Of course it included all the usual ‘boy’stuff in it……sweets, airplane kit, bouncy ball and a whoopee cushion! Nurse Rachel fell for that one, when she came in earlier. It brought a smile to Ella’s face for a while, anyway.
I’m just eating a little bit of feta salad at the moment. I’m not really supposed to in the room, but I guess a cold snack isn’t too much to ask, is it? I’ve just been told that the blinds opening onto the corridor, from all the rooms, have to be left open at all times according to the ‘matron’. Wonderful! I mean they are in and out of the room all the time anyway, and know that we will call them the moment we need them!! It makes one wonder why the rooms were fitted with blinds in the first place, doesn’t it?
On a brighter note I would like to say hello to Janet! Hi there, so glad to hear that you are OK and lots of love and best wishes from us all in your new job!
I am going to close now and do some reading to finish my night off. Ella is fast asleep but the machines are beeping so Jo is in and out a lot at the moment. Oh…..spoke too soon….she’s awake. Got to go.
Night night to everyone and we send you lots of love and all our thanks for your loving concern, support and prayers.
Ella and Annette.xx
Sunday, 12 July 2009
Day +156 Sun
Welcome to Manchester. It’s now Sunday evening around 9.45pm and Ella and I are just settling down for the night. I’ll just write you a short up date because as you know Sally and I have been at home, and news from there isn’t half as interesting.
I do know that Damian and Ella had a mixture of highs and lows over the last day. When I got back this afternoon we had a flurry of activity whilst Kirsty tried to get Ella’s lines to stop bleeping. I think they have got it sorted, although Alison….who has just come on duty…..has said that she is coming in shortly to change the lines over. The pressure in them is too high ( something like that anyway ) so the have got the bleeps!
I have just been reading a bedtime story to Ella…….which hasn’t worked….and she is still trying to get comfy. It’s worked for me though, I’m falling asleep!
I took 20mins off at teatime to go to the restaurant. I thought I’d have the roast dinner….chicken and the ‘trimmings’. What a disaster, it was terrible. They have got some suggestion cards in there, so I think I’ll be making a few tomorrow. They have us all over a barrel really, because there is nowhere else to eat.
( I’m off my S. Box now)
I must say a big thank you to all the children from OLOL, who added to Ella’s fabulous butterfly wishes display. It looks lovely in her room here, together with her two other hangings. They have been really admired by everyone who comes in and they have cheered us all up. I’ll take a photo of them for everyone to see tomorrow.
Tomorrow afternoon I’m actually going home for a few days. Rachael is going into hospital tomorrow, so I am going to stay at hers to help out with the children until she is on her feet again. I’ve got a list a mile long on paper, and in my head, of things to remember to do…..so watch this space, I’m bound to forget something.
Anyway, I’ll finish for now and get this posted.
Night night and lots of love and thanks for all your prayers and loving support.
Ella and Annette.xx
Welcome to Manchester. It’s now Sunday evening around 9.45pm and Ella and I are just settling down for the night. I’ll just write you a short up date because as you know Sally and I have been at home, and news from there isn’t half as interesting.
I do know that Damian and Ella had a mixture of highs and lows over the last day. When I got back this afternoon we had a flurry of activity whilst Kirsty tried to get Ella’s lines to stop bleeping. I think they have got it sorted, although Alison….who has just come on duty…..has said that she is coming in shortly to change the lines over. The pressure in them is too high ( something like that anyway ) so the have got the bleeps!
I have just been reading a bedtime story to Ella…….which hasn’t worked….and she is still trying to get comfy. It’s worked for me though, I’m falling asleep!
I took 20mins off at teatime to go to the restaurant. I thought I’d have the roast dinner….chicken and the ‘trimmings’. What a disaster, it was terrible. They have got some suggestion cards in there, so I think I’ll be making a few tomorrow. They have us all over a barrel really, because there is nowhere else to eat.
( I’m off my S. Box now)
I must say a big thank you to all the children from OLOL, who added to Ella’s fabulous butterfly wishes display. It looks lovely in her room here, together with her two other hangings. They have been really admired by everyone who comes in and they have cheered us all up. I’ll take a photo of them for everyone to see tomorrow.
Tomorrow afternoon I’m actually going home for a few days. Rachael is going into hospital tomorrow, so I am going to stay at hers to help out with the children until she is on her feet again. I’ve got a list a mile long on paper, and in my head, of things to remember to do…..so watch this space, I’m bound to forget something.
Anyway, I’ll finish for now and get this posted.
Night night and lots of love and thanks for all your prayers and loving support.
Ella and Annette.xx
Saturday, 11 July 2009
Day +154 +155 Frid./Sat
Good morning to everyone. It’s early Saturday morning….so early that the birthday girls haven’t woken up yet, so I am sat in semi light trying to get this posted before they do. Yesterday was Ella’s of course, and then we begin all over again today with Sally’s.
Ella’s day began yesterday when she was surrounded with balloons when she woke up. Sally had been to the shop across the road at 6.30am to get them, so they were here when she opened her eyes. Then we had the present opening ceremony, which, as you can imagine, took rather a long time. She had all kinds of everything,…. smellies, jewels, games, cushions, lovely books, Sylvanians, makeup, a clock, …..but one of her most favourites was from Dr Wynn, of course. He bought her some super writing, drawing and painting things……so I think we can see some art work in the offing.
By the time the magician arrived at 4.00pm Ella’s room was full of all her adoring fans and we were just waiting for Grace and her mum, Sam. If you remember Grace is Ella’s friend from school. They haven’t met up for a very long time and Ella was really looking forwards to seeing her again. The ward manager had given us the use of a small room at the end of the corridor, so we all trundled off there, where John ( the magician) had set up and where we had put out the party food etc. Ella held Grace’s hand all the way through it…it was lovely….One of the highlights of the afternoon was when John produced the magic wand Ella had made for him ages ago. Do you remember when he came to Pendlebury, to do a show for Ella when she was in isolation? She had made him a wand, which he has kept.
The boys and Sophie were as boisterous as usual and after an hour or so it was time for Ella to ‘retire’ to the calm of her room. When it had all settled down and the family had left for home, Grace and Sam stayed to let the girls have a play. They put makeup on each other and then tattooed each other….all the girly things we girls do to ….fab.
By the time Grace left Ella was zonked, and she fell fast asleep. She’s has a settled night too, so that has been the good end to a very exciting day. Hope you like the photos.
I’m going to close now and then I can fill you in on Sally’s birthday when we get back tomorrow. Sally and I are having a day ( and night ) at home and Daddy is taking over for the next 24hrs.
So, bye bye for now, lots of love to everyone and thanks for all your support and loving prayers as usual.
Ella ( now 8yrs and 1 day) Sally ( now ? and 5hrs) and Annette.xxx
PS They are still asleep and it’s 8.45am! Terrible!
Good morning to everyone. It’s early Saturday morning….so early that the birthday girls haven’t woken up yet, so I am sat in semi light trying to get this posted before they do. Yesterday was Ella’s of course, and then we begin all over again today with Sally’s.
Ella’s day began yesterday when she was surrounded with balloons when she woke up. Sally had been to the shop across the road at 6.30am to get them, so they were here when she opened her eyes. Then we had the present opening ceremony, which, as you can imagine, took rather a long time. She had all kinds of everything,…. smellies, jewels, games, cushions, lovely books, Sylvanians, makeup, a clock, …..but one of her most favourites was from Dr Wynn, of course. He bought her some super writing, drawing and painting things……so I think we can see some art work in the offing.
By the time the magician arrived at 4.00pm Ella’s room was full of all her adoring fans and we were just waiting for Grace and her mum, Sam. If you remember Grace is Ella’s friend from school. They haven’t met up for a very long time and Ella was really looking forwards to seeing her again. The ward manager had given us the use of a small room at the end of the corridor, so we all trundled off there, where John ( the magician) had set up and where we had put out the party food etc. Ella held Grace’s hand all the way through it…it was lovely….One of the highlights of the afternoon was when John produced the magic wand Ella had made for him ages ago. Do you remember when he came to Pendlebury, to do a show for Ella when she was in isolation? She had made him a wand, which he has kept.
The boys and Sophie were as boisterous as usual and after an hour or so it was time for Ella to ‘retire’ to the calm of her room. When it had all settled down and the family had left for home, Grace and Sam stayed to let the girls have a play. They put makeup on each other and then tattooed each other….all the girly things we girls do to ….fab.
By the time Grace left Ella was zonked, and she fell fast asleep. She’s has a settled night too, so that has been the good end to a very exciting day. Hope you like the photos.
I’m going to close now and then I can fill you in on Sally’s birthday when we get back tomorrow. Sally and I are having a day ( and night ) at home and Daddy is taking over for the next 24hrs.
So, bye bye for now, lots of love to everyone and thanks for all your support and loving prayers as usual.
Ella ( now 8yrs and 1 day) Sally ( now ? and 5hrs) and Annette.xxx
PS They are still asleep and it’s 8.45am! Terrible!
PPS Hope you enjoy the photos....just a few of many....which capture the moment.
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