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.
Thursday 9 July 2009
Day +153 Thurs.
Welcome to sunny Manchester, or at least mostly sunny. We have all had a good day, so let’s get on and tell you about it.
I had another night in the dormitory and boy did I sleep. I think it’s the first time for ages that I have slept really well. When I got to Ella’s room about 6.45am they were both fast asleep as well, especially Sally. Nurse Rachel let the cat out of the bag that Sally had been on the computer until the’ late’ early hours….and had only just gone to sleep. Needless to say she was really sleepy when I woke her up about 8.00am. A good cold shower……that’s what she needs!!!!!!!!!!!!
We have been on the 2nd day of our routine to get an early start in the morning. Kirsty rang the physios to see what time they would be here, and we got the answer, 10am. It was all systems go to get Mummy and Ella ready in time, and we made it with seconds to spare.
What a successful visit we had! Our physio today was again very positive with Ella, and before we knew it Ella had got to the edge of the bed and was walking out of the cubicle. She actually made it half way down the corridor, had a little sit and then back in again. It was wonderful to see those bambi legs back in use. THEN she sat out in the big arm chair( the one they brought the other day and she didn’t like ) in the window….looking out at the world and waving to everyone as they went over the bridges. We have a perfect view of the comings and goings in the out patients too, so people watching is fast becoming the new hobby! Ella sat there all day, apart from about hour….when we had a trip out to the restaurant. I don’t know how Dr Wynn managed to miss it again…but he did. Ella’s chin goes down a bit when she realises he isn’t coming, but we are holding out for tomorrow….he’s promised.
Muriel had to go home early today so they didn’t get to finish the cakes off. However another PS came along, and together they finished Mummy’s birthday card. Ella felt tired then(not surprised after such a busy day), so she had a snooze. They are making more cakes tomorrow.
My job this afternoon has been to ‘fill in the gaps’ in the preparations for the birthday treats tomorrow. Last minute panic buying….you know….’the have we got enough’ thing that happens at Christmas and birthdays. Then of course there are the candles to buy! What a lot of choice! I decided on gold and silver letters for some reason, then realised they clash with the High School Musical cake, once I’d got them back. Actually we won’t be able to light them in here anyway….we don’t want another FB incident do we?....
Sally went to our dormitory early tonight to catch up on some sleep. She’s just arrived back so that we start the wrapping! We learnt today that we are sharing tonight, so we didn’t think it fair to start crunching paper and tearing cellotape late in the evening. It’s strange isn’t it, how children can sleep through almost anything and then the minute you finish to sit down, they wake up? Anyway, we have a very large, interesting pile of parcels under the table. We are on balloon blowing up duty, first thing. Sally wants us to have bunches of balloons around the room and on the drip stand for when Ella wakes up. We may not get away with that one unnoticed!
Sally has gone back to the dorm now and I am on duty. Nurse Alison has arrived to sort out some medicines and I am going to finish and try to sleep a little.
Night night and lots of love to everyone. As usual, we send you our thanks for your prayers and loving support.
Ella, Sally and Annette. xxx
Welcome to sunny Manchester, or at least mostly sunny. We have all had a good day, so let’s get on and tell you about it.
I had another night in the dormitory and boy did I sleep. I think it’s the first time for ages that I have slept really well. When I got to Ella’s room about 6.45am they were both fast asleep as well, especially Sally. Nurse Rachel let the cat out of the bag that Sally had been on the computer until the’ late’ early hours….and had only just gone to sleep. Needless to say she was really sleepy when I woke her up about 8.00am. A good cold shower……that’s what she needs!!!!!!!!!!!!
We have been on the 2nd day of our routine to get an early start in the morning. Kirsty rang the physios to see what time they would be here, and we got the answer, 10am. It was all systems go to get Mummy and Ella ready in time, and we made it with seconds to spare.
What a successful visit we had! Our physio today was again very positive with Ella, and before we knew it Ella had got to the edge of the bed and was walking out of the cubicle. She actually made it half way down the corridor, had a little sit and then back in again. It was wonderful to see those bambi legs back in use. THEN she sat out in the big arm chair( the one they brought the other day and she didn’t like ) in the window….looking out at the world and waving to everyone as they went over the bridges. We have a perfect view of the comings and goings in the out patients too, so people watching is fast becoming the new hobby! Ella sat there all day, apart from about hour….when we had a trip out to the restaurant. I don’t know how Dr Wynn managed to miss it again…but he did. Ella’s chin goes down a bit when she realises he isn’t coming, but we are holding out for tomorrow….he’s promised.
Muriel had to go home early today so they didn’t get to finish the cakes off. However another PS came along, and together they finished Mummy’s birthday card. Ella felt tired then(not surprised after such a busy day), so she had a snooze. They are making more cakes tomorrow.
My job this afternoon has been to ‘fill in the gaps’ in the preparations for the birthday treats tomorrow. Last minute panic buying….you know….’the have we got enough’ thing that happens at Christmas and birthdays. Then of course there are the candles to buy! What a lot of choice! I decided on gold and silver letters for some reason, then realised they clash with the High School Musical cake, once I’d got them back. Actually we won’t be able to light them in here anyway….we don’t want another FB incident do we?....
Sally went to our dormitory early tonight to catch up on some sleep. She’s just arrived back so that we start the wrapping! We learnt today that we are sharing tonight, so we didn’t think it fair to start crunching paper and tearing cellotape late in the evening. It’s strange isn’t it, how children can sleep through almost anything and then the minute you finish to sit down, they wake up? Anyway, we have a very large, interesting pile of parcels under the table. We are on balloon blowing up duty, first thing. Sally wants us to have bunches of balloons around the room and on the drip stand for when Ella wakes up. We may not get away with that one unnoticed!
Sally has gone back to the dorm now and I am on duty. Nurse Alison has arrived to sort out some medicines and I am going to finish and try to sleep a little.
Night night and lots of love to everyone. As usual, we send you our thanks for your prayers and loving support.
Ella, Sally and Annette. xxx
Wednesday 8 July 2009
Hi, we thought you would like to see these happy photos of Ella and Muriel before they started to make the stickiest marshmallow cakes in the world. They show the view from Ella's window.....not quite a tree....but a great view of the glass walkways and the outpatients below. (That big cupboard 'thing' beside Ella is the parent bed, which pulls out from the wall.)
E,S,A.x
Day + 152 Weds
Here we go again. Hello everyone, it is now 8.30pm and all is well. We have come almost to the end of a good day, for everyone.
Reg rang earlier, to tell us that the hospital had been on the news….the opening? Is that right? There have been lots of camera crews around…but we didn’t see any royalty, just lots of ‘suits’.
Ella had another quite peaceful night and so did I….in the dormitory. No strange men tried to bunk in last night, typical! Jean, one of the Family Care team came this morning, and she hadn’t heard about the exploits of the night before. She couldn’t believe that their fool proof plan had failed. Anyway, one good thing has come out of it….we have got two bowls for our cereal, rather than using a mug, as we are at present. She is very ‘on our side’ about the accom. but there is little she can do. She is encouraging us to write a strong letter to the powers that be, to explain the situation. We will!
Dr Wynn came in to Ella early and stated his expectations for today. Up and about early and a trip to the restaurant….his treat. Ella perked up quite a lot, and so that’s what we did. Ella had a super wash, she was dancing on the bed (lay down) to her ipod and really enjoyed doing girly things to get ready. The physios wanted to be here when Ella was getting out of bed, so that they could see her walk a little. It didn’t work out too well to begin with because we were ready, but they couldn’t get to us, as the fire alarm went off and the floor they were on was evacuated. Eventually they turned up and Ella was the star turn….walking to the window, the door and getting into the chariot ready for the off. It’s the first time she has been out of bed for like this for weeks.
By 12.00pm we were ready for the procession to the restaurant. Dr Wynn couldn’t be found, but we set off anyway. The rest. was packed but the ‘waves parted’ for us, machines and all, and we sat at a table. Ella was beside herself with happiness. She had a packet of quavers and a cuppa…….it was soooooooooooo lovely to see. We were down there for about 20mins and than she was ready to leave. Little steps forwards each day. Dr Wynn came later this afternoon and wants to be there tomorrow. I think a quieter time would be better though.
When we got back Ella sat by the window looking out onto the atrium. It’s quite a height, 2 floors up. Then Muriel arrived to make the promised cakes for Ella’s party on Friday, so all in all she had quite a long session out in the chariot. Just as all this was going on Martin arrived. Ella, of course, was snookered by now….and snoozed all the time he was here……but I think she was forgiven, she had such a busy morning. We had a good chat anyway, and before I knew where we were it was time for him to go.
Sally has been at home this afternoon for Sam’s Parents’ Evening at school and then she was going to help Rachael to take them all to their swimming lessons. Ummm, best of luck. I think she will be back soon.
Only one more thing to tell you, the blind in our room has jammed half way across. This may not sound like a major catastrophic event to you, but it may be to us. You see, the parent bed is right in front of the window and is on full view to all the hospital! Oh, the chaps have arrived to fix it, right now.
It’s done!!!! Thank goodness.
Well we are going to say night night now, and send you all our love and thanks for loving prayers and support, as usual.
Ella, Sally and Annette.xxx
Here we go again. Hello everyone, it is now 8.30pm and all is well. We have come almost to the end of a good day, for everyone.
Reg rang earlier, to tell us that the hospital had been on the news….the opening? Is that right? There have been lots of camera crews around…but we didn’t see any royalty, just lots of ‘suits’.
Ella had another quite peaceful night and so did I….in the dormitory. No strange men tried to bunk in last night, typical! Jean, one of the Family Care team came this morning, and she hadn’t heard about the exploits of the night before. She couldn’t believe that their fool proof plan had failed. Anyway, one good thing has come out of it….we have got two bowls for our cereal, rather than using a mug, as we are at present. She is very ‘on our side’ about the accom. but there is little she can do. She is encouraging us to write a strong letter to the powers that be, to explain the situation. We will!
Dr Wynn came in to Ella early and stated his expectations for today. Up and about early and a trip to the restaurant….his treat. Ella perked up quite a lot, and so that’s what we did. Ella had a super wash, she was dancing on the bed (lay down) to her ipod and really enjoyed doing girly things to get ready. The physios wanted to be here when Ella was getting out of bed, so that they could see her walk a little. It didn’t work out too well to begin with because we were ready, but they couldn’t get to us, as the fire alarm went off and the floor they were on was evacuated. Eventually they turned up and Ella was the star turn….walking to the window, the door and getting into the chariot ready for the off. It’s the first time she has been out of bed for like this for weeks.
By 12.00pm we were ready for the procession to the restaurant. Dr Wynn couldn’t be found, but we set off anyway. The rest. was packed but the ‘waves parted’ for us, machines and all, and we sat at a table. Ella was beside herself with happiness. She had a packet of quavers and a cuppa…….it was soooooooooooo lovely to see. We were down there for about 20mins and than she was ready to leave. Little steps forwards each day. Dr Wynn came later this afternoon and wants to be there tomorrow. I think a quieter time would be better though.
When we got back Ella sat by the window looking out onto the atrium. It’s quite a height, 2 floors up. Then Muriel arrived to make the promised cakes for Ella’s party on Friday, so all in all she had quite a long session out in the chariot. Just as all this was going on Martin arrived. Ella, of course, was snookered by now….and snoozed all the time he was here……but I think she was forgiven, she had such a busy morning. We had a good chat anyway, and before I knew where we were it was time for him to go.
Sally has been at home this afternoon for Sam’s Parents’ Evening at school and then she was going to help Rachael to take them all to their swimming lessons. Ummm, best of luck. I think she will be back soon.
Only one more thing to tell you, the blind in our room has jammed half way across. This may not sound like a major catastrophic event to you, but it may be to us. You see, the parent bed is right in front of the window and is on full view to all the hospital! Oh, the chaps have arrived to fix it, right now.
It’s done!!!! Thank goodness.
Well we are going to say night night now, and send you all our love and thanks for loving prayers and support, as usual.
Ella, Sally and Annette.xxx
Tuesday 7 July 2009
Day +151 Tues
Hi everyone. Here we are on Tuesday afternoon and I’m starting early in a quiet 5mins, while Ella has a snooze.
We had a good night last night actually. Ella was awake a few times but no serious tummy ache. When Dr Wynn came he was pleased with her and has challenged her to be out of bed today, and even to have a short trip around the hospital….maybe to the restaurant….with us. Also he was asking if anybody had a birthday this week. Of course Ella pretended not to know, so he then challenged her to write down all our family birthdays before he comes again! We haven’t done that yet, but we have been out of bed and sat on Mummy’s knee for a while, and we have done a few leg exercises with the physios. She didn’t want to sit in ‘the chair’ so they utterly surprised her by operating her bed into almost a chair position. There is no escape!
Muriel came at the end of their session to work on a birthday card for Mummy, so that seemed to be a good time for Sally to go for her run and me to do my walk. The park is only at the end of the road and Sally was there in no time at all. There is a Nero coffee shop opposite, so while she was lapping the park I popped in there and got us 2 coffees so that we could recover on a park bench. ( actually I can’t tell a lie…..I didn’t need to sit down as I’d only just walked from the hospital. ) Needless to say it started to rain at this point, but it didn’t matter. We enjoyed the fresh air. Then we began ‘people watching’ and soon homed in to some very strange men lurking around ( well they seemed to be lurking). In fact one was relieving himself, in full view of everyone. Don’t worry….Sally will always have her matronly chaperone with her, and the park is really busy with cyclists, joggers and plenty of walkers using it as a cut through, onto Oxford Rd.
I must tell you about the latest night time adventure! As you know Sally went to the ‘dormitory’ for the night and had settled down to sleep when the door was unlocked, and in walked an auxiliary nurse with a man. Sally pretended to be asleep at first, but then the nurse asked Sally if she was a lady or a man, because she was looking for accom. for the man and had heard there was a spare bed in our room!!!!!! They beat a hasty retreat when she realised she was in the wrong room, but it was VERY wrong for that mishap to happen. When the Family Care lady came, to see how we are getting on, she was just as angry and set off to find the culprit, because there is supposed to be a strict protocol about keeping the women’s room keys and the men’s room keys separate! The outcome of it has been that the locks have all been changed. Honestly, what a ‘to do’!!! The thing is though, if there was proper accom in the first place this sort of thing wouldn’t happen, and couples/families/friends would be able to share in peace.
Well it is now 8.00pm and we are climbing the walls in one way and another. Sally because she is as stiff as a poker, me because I ‘m trying to connect us to a TV channel through the computer and it won’t accept the password and Ella because she is too hot. Anyway Radio Lollipop has just been to leave us some pictures to colour in…it’s great to see that they have moved over to the new site too. They do such a lot of voluntary good work don’t they?
We are going to finish now for today and then Sally can be horizontal! I expect she will feel less stiff tomorrow? But what do they say? No pain,no gain?
Night night, lots of love and thanks for your prayers and loving concern.
Ella, Sally and Annette.xxx
Hi everyone. Here we are on Tuesday afternoon and I’m starting early in a quiet 5mins, while Ella has a snooze.
We had a good night last night actually. Ella was awake a few times but no serious tummy ache. When Dr Wynn came he was pleased with her and has challenged her to be out of bed today, and even to have a short trip around the hospital….maybe to the restaurant….with us. Also he was asking if anybody had a birthday this week. Of course Ella pretended not to know, so he then challenged her to write down all our family birthdays before he comes again! We haven’t done that yet, but we have been out of bed and sat on Mummy’s knee for a while, and we have done a few leg exercises with the physios. She didn’t want to sit in ‘the chair’ so they utterly surprised her by operating her bed into almost a chair position. There is no escape!
Muriel came at the end of their session to work on a birthday card for Mummy, so that seemed to be a good time for Sally to go for her run and me to do my walk. The park is only at the end of the road and Sally was there in no time at all. There is a Nero coffee shop opposite, so while she was lapping the park I popped in there and got us 2 coffees so that we could recover on a park bench. ( actually I can’t tell a lie…..I didn’t need to sit down as I’d only just walked from the hospital. ) Needless to say it started to rain at this point, but it didn’t matter. We enjoyed the fresh air. Then we began ‘people watching’ and soon homed in to some very strange men lurking around ( well they seemed to be lurking). In fact one was relieving himself, in full view of everyone. Don’t worry….Sally will always have her matronly chaperone with her, and the park is really busy with cyclists, joggers and plenty of walkers using it as a cut through, onto Oxford Rd.
I must tell you about the latest night time adventure! As you know Sally went to the ‘dormitory’ for the night and had settled down to sleep when the door was unlocked, and in walked an auxiliary nurse with a man. Sally pretended to be asleep at first, but then the nurse asked Sally if she was a lady or a man, because she was looking for accom. for the man and had heard there was a spare bed in our room!!!!!! They beat a hasty retreat when she realised she was in the wrong room, but it was VERY wrong for that mishap to happen. When the Family Care lady came, to see how we are getting on, she was just as angry and set off to find the culprit, because there is supposed to be a strict protocol about keeping the women’s room keys and the men’s room keys separate! The outcome of it has been that the locks have all been changed. Honestly, what a ‘to do’!!! The thing is though, if there was proper accom in the first place this sort of thing wouldn’t happen, and couples/families/friends would be able to share in peace.
Well it is now 8.00pm and we are climbing the walls in one way and another. Sally because she is as stiff as a poker, me because I ‘m trying to connect us to a TV channel through the computer and it won’t accept the password and Ella because she is too hot. Anyway Radio Lollipop has just been to leave us some pictures to colour in…it’s great to see that they have moved over to the new site too. They do such a lot of voluntary good work don’t they?
We are going to finish now for today and then Sally can be horizontal! I expect she will feel less stiff tomorrow? But what do they say? No pain,no gain?
Night night, lots of love and thanks for your prayers and loving concern.
Ella, Sally and Annette.xxx
Monday 6 July 2009
Day + 147
Hi everyone, it’s Monday evening now and all is peace and quiet. It hasn’t been like this all day, so we are enjoying the calm after the storm.
Yesterday Sally and Reg arrived back with all the bits and pieces we needed, including the chariot, which is now stabled in the bathroom. Ella and I had a good day, quiet and very peaceful. Ella had a good start with a wash and then nurse Rachel chose her an outfit for the day….shorts and t shirt! I know Sally was really pleased to see her dressed. After Reg had left for home Sally settled down to spend the night with Ella in her room and I had the night ‘off’, in the dormitory. I needn’t have worried about having company….no other ladies appeared…..which worried me then, because I was on my own. The room
isn’t really off a main corridor, and while it is nice to have a bit of ‘me time’ for a while, it is a little bit strange being in there, too. (Come back Birmingham Parents Accom.) Anyway I did sleep. When I got back to the cubicle at 6.30 they were both fast asleep and stayed that way until 9.00!
Ella had a slow start today and didn’t really want a ‘wash and brush up’ today. We tried to persuade her that she would enjoy sitting in the bath, which is really cute, with a little seat just the right height. We were almost there….. when nurse Kirsty pointed out that there isn’t a plug….apparently for health and safety reasons! I’m speechless. We had a chat with Dr Wynn this morning, about our concerns that Ella is not motivated to do anything much, so he said he would get straight on to it today, and he has organised a meeting for everyone on Thurs. to discuss how to tackle it better. She needs her self esteem boosting and special understanding, by experienced key workers, to help her to gain her confidence back again.
We had told Kirsty that Ella had been given a cumfy chair last week, so she got on to the physios here and before we could turn around they were at the door with a super deluxe model….a water chair….for her to try. Sally and I bowed out of this one and after some cajoling they got her into it, if only for a short time. All the BMU windows over look the main atrium and out patients d’part, and we would really like Ella to be able to look out and see what is going on down there. Maybe tomorrow we can aspire to that…the physios are coming twice a day from now on, and Muriel, the play specialist too. Dr Wynn told us that Ella can go out into the rest of the hospital to have a look round ( with a nurse of course to sort out the lines) any time she wants to, so we are looking forwards to that one day.
Grandma and Grandad have been to visit this afternoon. They brought Ella some really nice pressies from their holidays, and she enjoyed looking at those. Unfortunately she’s had tummy ache today and hasn’t felt much like joining in.
When Chris and John got here Sally decided it was a good time to start her new hobby….running, well jogging. There is a lovely park not far from the hospital, so fair doooo’s, she got changed into all the gear, and off she set. She must have sprinted there and back, because she was back really quickly. Sally has challenged me to buy some trainers too….maybe, maybe not. We have decided, though, that we are going to have at least half an hour each day outside the hospital walls. So tomorrow could see Sally jogging and I power walking round the park, ( can you power walk in flip flops?) maybe while Muriel is here with Ella.
We have got a big day coming up on Friday. Someone we know is going to be 8yrs old!!! We are organising a special day for her and we have asked if we could use the bigger meeting room, at the end of the corridor, to have a party in. We have got John, the clown from Southport, to come and Rachael is bringing the boys. Grace, Ella’s friend from school is coming and of course Daddy. I guess she will have some VIP’S visiting in the morning too. I think there will be lots of noise up here that day….blow the rules eh? Then we start again on Saturday….because someone, else not very far away, has a birthday on that day!! Talk about expense………………….
When I asked Sally what she wanted she muttered something about ‘Take That’ coming to sing for her. I can do lots of things, but that is one miracle too many, even for me. Unless anyone has got any contacts out there?
Well, we are going to finish now and get this posted off. I am still so ‘made up’ that we can actually keep in touch again, I hardly dare try out the dongle, just in case I have to go to sleep sulking. It’s my turn to stay up with the princess…so far so good. I am sat beside her and she knows I’m here. She keeps doing a quick peep! I just know that the moment I switch off and head for the bed she will wake up. Fingers crossed that she will have another settled night, although at the rate the bleeping bleepers are going off, I think both of us will be bleeping fed up by morning. ( I think one of them has got an air lock or something.)
Night night anyway, and lots of love to everyone, with all our thanks for your loving support and prayers.
Ella. Sally and Annette.xxx
PS Who thinks Sally will be stiff in the morning?
PPS Who thinks Nanna will be stiff on Weds, morning?
PPPS Rumour has it that some TV’s have appeared in the unit! MAYBE there is some light at the end of the tunnel and we will have something else to look at, other than the bare walls soon?
PPPPS I promise some photos soon of the new room etc
Hi everyone, it’s Monday evening now and all is peace and quiet. It hasn’t been like this all day, so we are enjoying the calm after the storm.
Yesterday Sally and Reg arrived back with all the bits and pieces we needed, including the chariot, which is now stabled in the bathroom. Ella and I had a good day, quiet and very peaceful. Ella had a good start with a wash and then nurse Rachel chose her an outfit for the day….shorts and t shirt! I know Sally was really pleased to see her dressed. After Reg had left for home Sally settled down to spend the night with Ella in her room and I had the night ‘off’, in the dormitory. I needn’t have worried about having company….no other ladies appeared…..which worried me then, because I was on my own. The room
isn’t really off a main corridor, and while it is nice to have a bit of ‘me time’ for a while, it is a little bit strange being in there, too. (Come back Birmingham Parents Accom.) Anyway I did sleep. When I got back to the cubicle at 6.30 they were both fast asleep and stayed that way until 9.00!
Ella had a slow start today and didn’t really want a ‘wash and brush up’ today. We tried to persuade her that she would enjoy sitting in the bath, which is really cute, with a little seat just the right height. We were almost there….. when nurse Kirsty pointed out that there isn’t a plug….apparently for health and safety reasons! I’m speechless. We had a chat with Dr Wynn this morning, about our concerns that Ella is not motivated to do anything much, so he said he would get straight on to it today, and he has organised a meeting for everyone on Thurs. to discuss how to tackle it better. She needs her self esteem boosting and special understanding, by experienced key workers, to help her to gain her confidence back again.
We had told Kirsty that Ella had been given a cumfy chair last week, so she got on to the physios here and before we could turn around they were at the door with a super deluxe model….a water chair….for her to try. Sally and I bowed out of this one and after some cajoling they got her into it, if only for a short time. All the BMU windows over look the main atrium and out patients d’part, and we would really like Ella to be able to look out and see what is going on down there. Maybe tomorrow we can aspire to that…the physios are coming twice a day from now on, and Muriel, the play specialist too. Dr Wynn told us that Ella can go out into the rest of the hospital to have a look round ( with a nurse of course to sort out the lines) any time she wants to, so we are looking forwards to that one day.
Grandma and Grandad have been to visit this afternoon. They brought Ella some really nice pressies from their holidays, and she enjoyed looking at those. Unfortunately she’s had tummy ache today and hasn’t felt much like joining in.
When Chris and John got here Sally decided it was a good time to start her new hobby….running, well jogging. There is a lovely park not far from the hospital, so fair doooo’s, she got changed into all the gear, and off she set. She must have sprinted there and back, because she was back really quickly. Sally has challenged me to buy some trainers too….maybe, maybe not. We have decided, though, that we are going to have at least half an hour each day outside the hospital walls. So tomorrow could see Sally jogging and I power walking round the park, ( can you power walk in flip flops?) maybe while Muriel is here with Ella.
We have got a big day coming up on Friday. Someone we know is going to be 8yrs old!!! We are organising a special day for her and we have asked if we could use the bigger meeting room, at the end of the corridor, to have a party in. We have got John, the clown from Southport, to come and Rachael is bringing the boys. Grace, Ella’s friend from school is coming and of course Daddy. I guess she will have some VIP’S visiting in the morning too. I think there will be lots of noise up here that day….blow the rules eh? Then we start again on Saturday….because someone, else not very far away, has a birthday on that day!! Talk about expense………………….
When I asked Sally what she wanted she muttered something about ‘Take That’ coming to sing for her. I can do lots of things, but that is one miracle too many, even for me. Unless anyone has got any contacts out there?
Well, we are going to finish now and get this posted off. I am still so ‘made up’ that we can actually keep in touch again, I hardly dare try out the dongle, just in case I have to go to sleep sulking. It’s my turn to stay up with the princess…so far so good. I am sat beside her and she knows I’m here. She keeps doing a quick peep! I just know that the moment I switch off and head for the bed she will wake up. Fingers crossed that she will have another settled night, although at the rate the bleeping bleepers are going off, I think both of us will be bleeping fed up by morning. ( I think one of them has got an air lock or something.)
Night night anyway, and lots of love to everyone, with all our thanks for your loving support and prayers.
Ella. Sally and Annette.xxx
PS Who thinks Sally will be stiff in the morning?
PPS Who thinks Nanna will be stiff on Weds, morning?
PPPS Rumour has it that some TV’s have appeared in the unit! MAYBE there is some light at the end of the tunnel and we will have something else to look at, other than the bare walls soon?
PPPPS I promise some photos soon of the new room etc
Sunday 5 July 2009
Day +147
Good morning from Manchester. Actually I think it is day 148 because it is now Sunday! I tried the connection last night from here and it DIDN’T work. However many prayers later here we are and we have lift off.
Ella had a ‘busy’ night with Daddy on Saturday and as a result the Dr put the pain relief up for yesterday. When I took over at teatime things began to settle down again and we had a quiet night on the whole. We only woke up for pillow re –arranging and drinks, which was a great improvement.
When we got up this morning nurse Rachel sat with Ella whilst I went to have a shower and a cup of tea. (I’m afraid the days of drinks etc in the cubicle are over….in fact we are not allowed to even use the bathroom in here. Last night I went to the allotted ‘facility’ for parents, only to find a big puddle on the floor in there, so guess what? I was very disobedient and used the bathroom in here. I can see very little point in carrying ‘anything’ back into here. It seems to defeat the object really! ) When I got back we decided between us all that Ella should have a good wash too and get dressed. Sooooo a very reluctant princess was washed and dressed in shorts and t-shirt and sat out on Rachel’s knee, whilst Andrea and I changed the bed. We also decided that Ella needs to roll off her favoured side onto her back and then the other side a lot more regularly. Her skin is marking very easily at present and we don’t want her to get sore. It hasn’t gone down very well, and we now have a very sulky princess….in fact I have taken the flack for it completely. It’s a good job I have broad shoulders eh? I popped down the shop earlier to get some new stickers to start a new chart for when Ella is being really brave. It’s almost full for today already.
We are expecting Mummy and Reg in a little while. They are bringing the chariot back…it has been all over the country. Oh! And some news hot off the press…an air (bouncy castle ) mattress has arrived, so Ella had another sit out on nurse Rachel’s knee whilst that was installed.
So far we have watched Princess Diaries, Mrs Doubtfire, and Grease has just started. Ella isn’t interested at the moment, but we are keeping going. I’m sure she will come round soon.
We are going to close now and send lots of love to everyone, and all our thanks for your loving prayers and support. It was good to catch up on your news.
Ella an Annette.xx
PS I’m sending this off earlier in case the connection is poor tonight.
PPS Congrats to you Mrs Robinson, that’s really good news.
PPPS I wondered who was flashing me Martin. We will start practising our raps straight away. The rhythmns can be quite tricky can't they?
Good morning from Manchester. Actually I think it is day 148 because it is now Sunday! I tried the connection last night from here and it DIDN’T work. However many prayers later here we are and we have lift off.
Ella had a ‘busy’ night with Daddy on Saturday and as a result the Dr put the pain relief up for yesterday. When I took over at teatime things began to settle down again and we had a quiet night on the whole. We only woke up for pillow re –arranging and drinks, which was a great improvement.
When we got up this morning nurse Rachel sat with Ella whilst I went to have a shower and a cup of tea. (I’m afraid the days of drinks etc in the cubicle are over….in fact we are not allowed to even use the bathroom in here. Last night I went to the allotted ‘facility’ for parents, only to find a big puddle on the floor in there, so guess what? I was very disobedient and used the bathroom in here. I can see very little point in carrying ‘anything’ back into here. It seems to defeat the object really! ) When I got back we decided between us all that Ella should have a good wash too and get dressed. Sooooo a very reluctant princess was washed and dressed in shorts and t-shirt and sat out on Rachel’s knee, whilst Andrea and I changed the bed. We also decided that Ella needs to roll off her favoured side onto her back and then the other side a lot more regularly. Her skin is marking very easily at present and we don’t want her to get sore. It hasn’t gone down very well, and we now have a very sulky princess….in fact I have taken the flack for it completely. It’s a good job I have broad shoulders eh? I popped down the shop earlier to get some new stickers to start a new chart for when Ella is being really brave. It’s almost full for today already.
We are expecting Mummy and Reg in a little while. They are bringing the chariot back…it has been all over the country. Oh! And some news hot off the press…an air (bouncy castle ) mattress has arrived, so Ella had another sit out on nurse Rachel’s knee whilst that was installed.
So far we have watched Princess Diaries, Mrs Doubtfire, and Grease has just started. Ella isn’t interested at the moment, but we are keeping going. I’m sure she will come round soon.
We are going to close now and send lots of love to everyone, and all our thanks for your loving prayers and support. It was good to catch up on your news.
Ella an Annette.xx
PS I’m sending this off earlier in case the connection is poor tonight.
PPS Congrats to you Mrs Robinson, that’s really good news.
PPPS I wondered who was flashing me Martin. We will start practising our raps straight away. The rhythmns can be quite tricky can't they?
Friday 3 July 2009
Day +146
Hi there everyone. I’m so excited to say that we are back on line. But where are we you may ask…..? Well we are back in Manchester. We were transferred today, Friday, and arrived back here about 1.00pm. Actually I’m blogging from Southport, because Daddy is staying tonight, which is probably the reason why we have got such a good connection. We have tried every single day to catch up on news…..but here we are now. I’ll fill in some of the details, but forgive me if it is a more sketchy picture than usual.
The last couple of days, (Weds. Thurs.) have been filled with quite extensive tests for Ella….xrays, ultra sounds and MRI. These, together with the tremendous heat, have really put pay to any ‘perky’ days Ella may have had. The heat of course has been tremendous for everyone, but the little children on that unit were really melting….with fans going and windows open all the time. Even though it was all brand new the AC wasn’t up and running. Anyway, we all made the best of it…in fact Ella raised enough energy yesterday to make some cookies with one of her teachers.
Ella’s Drs decided that she should be transferred back today and the ‘Ambulbus’ was booked for 10.00am. Needless to say Sally and I were packing from the night before….trying to shoe-horn all our belongings ( and Ella’s ) into the Puma! We eventually finished this morning with about 20mins to go.
Ella had a really good journey back ‘home’ with Mummy and two of her nurses, and I followed on with the proverbial. What a welcome she had! It was genuine relief and very emotional for we three, and Ella’s angels and Drs, and when Dr Wynn heard she was back he dashed into her room and knelt by her bed to hold her hand. It was lovely to see.
Then it was back to business, as Sarah sorted out all the lines again and got Ella settled for a comfortable night.
Sally and I finally hit Southport at tea time….just in time to take in a curry, sleep and do a quick turn a round. That is after we have sorted out our summer wardrobes. We have definitely got to find some cooler clothes to take back. Not only cooler ….but also clothes that don’t take up any space, that never need washing or ironing and don’t need hanging up or storing in any way. Don’t forget we are back into the Manchester accom. from tomorrow….a shared room with up to 3 other mums and none of the above luxuries. We thought we were really spoiled in Birmingham, but in retrospect if they can do it and provide very comfortable, well run and a well planned haven for families, why can’t Manchester? Why should families have to wait until 2010 for the building to begin? (You’ll be pleased to hear that I’m off my soap box now)
I think we may just spend the day tomorrow with Sam,Jack,Max and Sophie to bring us back to reality with a bump. The Ainsdale show is on of course, so that may be an option. Lets hope the weather is ok.
We are going to say nite nite for now, and send all our love and thanks for your support and loving prayers.
Ella, Sally and Annette.xxx
PS Let us know if you are still there or have you given up on us
Hi there everyone. I’m so excited to say that we are back on line. But where are we you may ask…..? Well we are back in Manchester. We were transferred today, Friday, and arrived back here about 1.00pm. Actually I’m blogging from Southport, because Daddy is staying tonight, which is probably the reason why we have got such a good connection. We have tried every single day to catch up on news…..but here we are now. I’ll fill in some of the details, but forgive me if it is a more sketchy picture than usual.
The last couple of days, (Weds. Thurs.) have been filled with quite extensive tests for Ella….xrays, ultra sounds and MRI. These, together with the tremendous heat, have really put pay to any ‘perky’ days Ella may have had. The heat of course has been tremendous for everyone, but the little children on that unit were really melting….with fans going and windows open all the time. Even though it was all brand new the AC wasn’t up and running. Anyway, we all made the best of it…in fact Ella raised enough energy yesterday to make some cookies with one of her teachers.
Ella’s Drs decided that she should be transferred back today and the ‘Ambulbus’ was booked for 10.00am. Needless to say Sally and I were packing from the night before….trying to shoe-horn all our belongings ( and Ella’s ) into the Puma! We eventually finished this morning with about 20mins to go.
Ella had a really good journey back ‘home’ with Mummy and two of her nurses, and I followed on with the proverbial. What a welcome she had! It was genuine relief and very emotional for we three, and Ella’s angels and Drs, and when Dr Wynn heard she was back he dashed into her room and knelt by her bed to hold her hand. It was lovely to see.
Then it was back to business, as Sarah sorted out all the lines again and got Ella settled for a comfortable night.
Sally and I finally hit Southport at tea time….just in time to take in a curry, sleep and do a quick turn a round. That is after we have sorted out our summer wardrobes. We have definitely got to find some cooler clothes to take back. Not only cooler ….but also clothes that don’t take up any space, that never need washing or ironing and don’t need hanging up or storing in any way. Don’t forget we are back into the Manchester accom. from tomorrow….a shared room with up to 3 other mums and none of the above luxuries. We thought we were really spoiled in Birmingham, but in retrospect if they can do it and provide very comfortable, well run and a well planned haven for families, why can’t Manchester? Why should families have to wait until 2010 for the building to begin? (You’ll be pleased to hear that I’m off my soap box now)
I think we may just spend the day tomorrow with Sam,Jack,Max and Sophie to bring us back to reality with a bump. The Ainsdale show is on of course, so that may be an option. Lets hope the weather is ok.
We are going to say nite nite for now, and send all our love and thanks for your support and loving prayers.
Ella, Sally and Annette.xxx
PS Let us know if you are still there or have you given up on us
Days +140,141,142 (Sat.Sun.Mon.)
We haven’t forgotten you all….hope you haven’t given up on us? The problem is the dongle!!! We can’t get a connection, so we have been out of contact all over the weekend. At first I thought it was us, but I have been to the ‘dongle shop’ today and the ‘dongle man’ assures me that everyone has been having network problems and it should be ok by tomorrow, Tuesday. Anyway, I’ll keep on writing and when these epistles eventually hit the waves you’ll all have to sit down with a cuppa to catch up.
We had our change over day on Saturday in every sense of the word! We moved into our new room and Daddy came to stay for the night, so we had a change over in that way too.
Firstly the room….it is very nice and light, with a floor length window to look out of, as I have told you. We have managed to fill it already. Over the weekend it was full of people, let alone ‘stuff’. But you know us girls, we don’t travel light. Daddy arrivd in time to do some of the lugging about and Sam joined in too, and by lunch time we were in. Reg then arrived with the chariot and drawers! The chair is in the bathroom and the drawers just about fit in along one wall.
Saturday night Ella was solo with Daddy….I know they had an ‘interesting’ night and when we arrived here on Sunday morning for breakfast he was ready for a shower and a break. Our Saturday night was interesting too….after our romantic dinner for four, Reg and I had a drink in the bar, where we got tangled up with a wedding party, and then in the middle of the night the fire alarms went off. Fortunately we weren’t evacuated…
Sunday saw us going off for the afternoon to the Sea Life centre with Sam. Little Ella looked after Daddy here, but she was settled enough and had lots of treats when we got back. Birmingham is proving to be a really interesting place to visit…with lots of centres of interest, not to mention the shopping. Daddy and Reg left on Sunday teatime and Rachael and Ian arrived. Auntie Rachael did the honours Sunday night….again it was interesting….but not as much as Sally,Sam and Ian’s was. The fire alarm went off in the hotel for real this time….the FB arrived in full force and everyone had to wait outside until it was cleared. Someone had been smoking of course…it really isn’t on, especially when little ones are outside in their pj’s until all hours.
We can beat that today though….we have had the FB up here on the unit. One of the builders cut through a wire and set the alarm off for the hospital. At the same time Rachael had gone down to the restaurant to get us some lunch and was frantically phoning me to see if we had been evacuated. I don’t know…what is it about us and the FB?
We have got lots of family birthdays coming up next month and I needed to get Sophie a card, as hers is on the 1st. Rachael did the honours whilst I went to find a card shop. Where did I end up? The Bull Ring, and in the heat of today as well. It’s very impressive around there, but it was incredibly hot. When I got back Ella and Rachael were melting too….not to mention all the staff. Fans were fanning, windows were wide open and all the children were soooooooooo hot. You can imagine lying in bed in that heat?
On the whole Ella is a little better than when we arrived. The pain control seems to working more smoothly, and she is enjoying her little tastes of food. It’s just difficult to keep a rein on the drinks, especially when it’s hot like this. The gastro Drs are looking to do more tests this week…a barium meal and an MRI scan….. In the meantime the transplant team are checking up on her daily to make sure that all her usual treatments are carrying on as usual. Not to mention our Manchester team, who are checking in every day as well.
We have had a very quiet day today. Kirsty, Ella’s teacher came early and they finished off a butterfly started last week, and from then Ella has just snoozed. Nurse Sam has been in charge today. She is lovely and very experienced. She has tried to get Ella motivated too, but to no avail. It has just been too hot. Anyway, there was a spark of interest when Sam said that Ella would have to get out of bed tomorrow….for a little sit out…and if she is not in charge of the ward tomorrow she may have time to take Ella for a little walk, to see the garden. It is all good motivation, which is what Ella needs right now.
I’m going to finish for tonight. It’s midnight on Monday and I’ll try to get this posted tomorrow. As of this moment there still isn’t a connection.
Night night with lots of love and thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx
We haven’t forgotten you all….hope you haven’t given up on us? The problem is the dongle!!! We can’t get a connection, so we have been out of contact all over the weekend. At first I thought it was us, but I have been to the ‘dongle shop’ today and the ‘dongle man’ assures me that everyone has been having network problems and it should be ok by tomorrow, Tuesday. Anyway, I’ll keep on writing and when these epistles eventually hit the waves you’ll all have to sit down with a cuppa to catch up.
We had our change over day on Saturday in every sense of the word! We moved into our new room and Daddy came to stay for the night, so we had a change over in that way too.
Firstly the room….it is very nice and light, with a floor length window to look out of, as I have told you. We have managed to fill it already. Over the weekend it was full of people, let alone ‘stuff’. But you know us girls, we don’t travel light. Daddy arrivd in time to do some of the lugging about and Sam joined in too, and by lunch time we were in. Reg then arrived with the chariot and drawers! The chair is in the bathroom and the drawers just about fit in along one wall.
Saturday night Ella was solo with Daddy….I know they had an ‘interesting’ night and when we arrived here on Sunday morning for breakfast he was ready for a shower and a break. Our Saturday night was interesting too….after our romantic dinner for four, Reg and I had a drink in the bar, where we got tangled up with a wedding party, and then in the middle of the night the fire alarms went off. Fortunately we weren’t evacuated…
Sunday saw us going off for the afternoon to the Sea Life centre with Sam. Little Ella looked after Daddy here, but she was settled enough and had lots of treats when we got back. Birmingham is proving to be a really interesting place to visit…with lots of centres of interest, not to mention the shopping. Daddy and Reg left on Sunday teatime and Rachael and Ian arrived. Auntie Rachael did the honours Sunday night….again it was interesting….but not as much as Sally,Sam and Ian’s was. The fire alarm went off in the hotel for real this time….the FB arrived in full force and everyone had to wait outside until it was cleared. Someone had been smoking of course…it really isn’t on, especially when little ones are outside in their pj’s until all hours.
We can beat that today though….we have had the FB up here on the unit. One of the builders cut through a wire and set the alarm off for the hospital. At the same time Rachael had gone down to the restaurant to get us some lunch and was frantically phoning me to see if we had been evacuated. I don’t know…what is it about us and the FB?
We have got lots of family birthdays coming up next month and I needed to get Sophie a card, as hers is on the 1st. Rachael did the honours whilst I went to find a card shop. Where did I end up? The Bull Ring, and in the heat of today as well. It’s very impressive around there, but it was incredibly hot. When I got back Ella and Rachael were melting too….not to mention all the staff. Fans were fanning, windows were wide open and all the children were soooooooooo hot. You can imagine lying in bed in that heat?
On the whole Ella is a little better than when we arrived. The pain control seems to working more smoothly, and she is enjoying her little tastes of food. It’s just difficult to keep a rein on the drinks, especially when it’s hot like this. The gastro Drs are looking to do more tests this week…a barium meal and an MRI scan….. In the meantime the transplant team are checking up on her daily to make sure that all her usual treatments are carrying on as usual. Not to mention our Manchester team, who are checking in every day as well.
We have had a very quiet day today. Kirsty, Ella’s teacher came early and they finished off a butterfly started last week, and from then Ella has just snoozed. Nurse Sam has been in charge today. She is lovely and very experienced. She has tried to get Ella motivated too, but to no avail. It has just been too hot. Anyway, there was a spark of interest when Sam said that Ella would have to get out of bed tomorrow….for a little sit out…and if she is not in charge of the ward tomorrow she may have time to take Ella for a little walk, to see the garden. It is all good motivation, which is what Ella needs right now.
I’m going to finish for tonight. It’s midnight on Monday and I’ll try to get this posted tomorrow. As of this moment there still isn’t a connection.
Night night with lots of love and thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx
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