Day +203 ( Thurs 27th)
Hi and welcome back to us here. We have had a very successful day again…hope you have too.
Ella slept well during the night, with just the usual waking times to have one of her 8 pillows adjusted. Yes 8!!!!!!! We just buy the cheap, soft squashy ones from Tesco, and then Ella can make a nest with them. They are always in the wash of course, but as long as they don’t go in the dryer too they are ok.
We were expecting Linda, from the Rainbow Trust this morning at 11.00am, so Ella wanted to have a bath before she came and be all spruced up ready. The bath was another success….but very relaxing. So much so that Ella had given her all and fell asleep for some of Linda’s visit. They did make some nice things together though and Ella enjoyed it.Next on the activity list was a visit to physio, where Ella whooped me at bowling. She scored 6 strikes in a row, and then finished on a strike. We ended the afternoon with a snooze, which wasn’t surprising really.
Sally has taken Sam away for a couple of nights, to Camelot, so there has been a lot of phoning back and forth, to find out how they are going on. I n fact the last call was about 9.30pm and Sam was still up and bouncing around. Ella takes it all in her stride….she is a real star. We celebrated in a different way. We shared a prawn sandwich, a bag of prawn cocktail crisps and a Yorkie. Ella is really funny…..she feeds me the sandwich, but I have to eat all the crusts first, then the filling. It’s really hard to do that without a drink, but we can’t have a hot drink in here, so I always end up with hiccups. Ella, meantime, nibbles carefully on half a prawn and then discards it, in case it gets stuck in her tube!
It’s 10.30pm now and it looks as though Ella has settled for the next hour or so. Her PCA is on ‘lock out’ for 45mins now, so she is going much longer between each infusion. It has worked very well so far, and it means that she isn’t requesting it every 15mins, as she was up to 3 weeks ago.
We’ll say goodnight then, and hopefully speak over the weekend. Daddy is coming tomorrow night and is staying for 2 nights, so I guess it will be Sunday before I’m back. We hope you all have a super holiday weekend.
Night night and lots of love and thanks, for your prayers and support.
Ella and Annette xx
PS We are using bathtime tomorrow as our physio and Ali is bringing along some bathtoys!
PPS I had a 'run in' with the service provider here at the hospital, this morning. Our lovely cleaner, Joan, had to apologise because she didn't have a mop to use...so couldn't mop our room. I saw red of course and made a VERY pointed phone call to complain, and ask why my Grand daughter's room was not being mopped out ?The manager was up here in less than 10mins with new mops, and then when he had gone Joan told me that he had blamed her, because she had told me they didn't have mops to use. He had expected her to just carry on and not say anything. Didn't he think that I would have noticed if the room hadn't been mopped? I can't wait for 'round 2' if the same happens tomorrow!!! Watch this space. This eclipses the TV and food complaints by a mile, don't you think? Just what I need to get my teeth into!x
Thursday 27 August 2009
Wednesday 26 August 2009
Day 202 ( Wed 26th )
Here we are again, after a long week of silence……from us to you anyway. I have been in Southport, with Sally, looking after the troupes back there, while Rachael has been here with Ella. Then Daddy did his usual weekend night, and then Mummy came back on Sunday to take over, until today, and now I’m back! Did you manage to keep track of all that? We struggle sometimes …….especially in the middle of the night, when you wake up and can’t remember where you are!!!!!!
Ella has had a good week though, so that is the main thing isn’t it? She has been much more active and wants to join with all the special things which have been organised for her. She has struggled with a rash, this week. The Drs haven’t got to the bottom of it, but she is having treatment for it, which seems to be helping. We are still waiting for the results of the scope. I know that there has been some cooking going on….with Emily and the OT’s and today something very special happened. Grace came to see her. She was so excited yesterday, when she phoned to tell me. By the time I arrived today they had had their nails painted, had eaten a chocolate fondue and were watching a DVD.
I have got to tell you about another big step forward! On Monday Ella had her first bath!!! Sally rang to tell me, and then later Ella rang and we played the ‘ GUESS WHAT I DID TODAY?’ game. I was really delighted for her and for Sally. The first time she has been in the bath properly for 7 months. I think it only lasted about 2mins, but it was a success, and it obviously gave her lots of confidence for tonight’s bath. Ella has a specially designed bath, with a seat and a board across it….which both take a bit of manoeuvring when you are still attached to your lines, but she had a lovely time tonight and was in there for a good 10mins. I had a good look for bath toys before I came, but the best I could do were some brightly coloured beakers. For tomorrow’s session Joanne suggested a few syringes….great idea. I think I can guess who’s in for soaking can’t you?
I’m going to finish early tonight, or at least try to. Ella is sleeping soundly, so I should take this opportunity while I can, but things keep popping into my mind. For example, I haven’t told you about the meeting last Weds, when everyone concerned with Ella’s care, both now and in the future, had the chance to listen and join in discussion. Andrea and June came along, and they brought Heather and Sam with them. They had a lovely afternoon playing.
So, night night from Ella and me, we’ll speak to you again tomorrow and for now we send you lots of love and thanks, for your special care and concern.
Ella and Annette.xx
PS It was lovely to see you both today, Grace and Sam.
PPS I have decided we have lived long enough without a TV….so I’ve bought one!!!!!!!! We haven’t got an ariel of course, but at least we can watch DVD’S on a proper screen.
PPPS Don’t buy the ‘Hang Man’ game from Tecso….it’s much easier with pencil and paper, trust me!!
Here we are again, after a long week of silence……from us to you anyway. I have been in Southport, with Sally, looking after the troupes back there, while Rachael has been here with Ella. Then Daddy did his usual weekend night, and then Mummy came back on Sunday to take over, until today, and now I’m back! Did you manage to keep track of all that? We struggle sometimes …….especially in the middle of the night, when you wake up and can’t remember where you are!!!!!!
Ella has had a good week though, so that is the main thing isn’t it? She has been much more active and wants to join with all the special things which have been organised for her. She has struggled with a rash, this week. The Drs haven’t got to the bottom of it, but she is having treatment for it, which seems to be helping. We are still waiting for the results of the scope. I know that there has been some cooking going on….with Emily and the OT’s and today something very special happened. Grace came to see her. She was so excited yesterday, when she phoned to tell me. By the time I arrived today they had had their nails painted, had eaten a chocolate fondue and were watching a DVD.
I have got to tell you about another big step forward! On Monday Ella had her first bath!!! Sally rang to tell me, and then later Ella rang and we played the ‘ GUESS WHAT I DID TODAY?’ game. I was really delighted for her and for Sally. The first time she has been in the bath properly for 7 months. I think it only lasted about 2mins, but it was a success, and it obviously gave her lots of confidence for tonight’s bath. Ella has a specially designed bath, with a seat and a board across it….which both take a bit of manoeuvring when you are still attached to your lines, but she had a lovely time tonight and was in there for a good 10mins. I had a good look for bath toys before I came, but the best I could do were some brightly coloured beakers. For tomorrow’s session Joanne suggested a few syringes….great idea. I think I can guess who’s in for soaking can’t you?
I’m going to finish early tonight, or at least try to. Ella is sleeping soundly, so I should take this opportunity while I can, but things keep popping into my mind. For example, I haven’t told you about the meeting last Weds, when everyone concerned with Ella’s care, both now and in the future, had the chance to listen and join in discussion. Andrea and June came along, and they brought Heather and Sam with them. They had a lovely afternoon playing.
So, night night from Ella and me, we’ll speak to you again tomorrow and for now we send you lots of love and thanks, for your special care and concern.
Ella and Annette.xx
PS It was lovely to see you both today, Grace and Sam.
PPS I have decided we have lived long enough without a TV….so I’ve bought one!!!!!!!! We haven’t got an ariel of course, but at least we can watch DVD’S on a proper screen.
PPPS Don’t buy the ‘Hang Man’ game from Tecso….it’s much easier with pencil and paper, trust me!!
Wednesday 19 August 2009
Tuesday 18 August 2009
Day +195 ( Weds 19th)
Good morning, it’s 6.00am and all’s well. Ella is sleeping and is actually making little mousy noises, so I guess it must be a good dream. I think we’ve had a good night! We’ve been up a few times, but nothing too bad….just a grumpy Nanna I think! I’ve just been and made myself cuppa………it’s well and truly forbidden, but Kelly turned a blind eye………so I’m sat in heaven sipping a hot, sweet drink.
Ella had another super day yesterday. She did have a very long lie in though, so that by the time we were up and dressed it was 11.00am. We have got a new ‘auxi’ called Letitia….only very young….and she helped us to wash our hair. Ella was delighted, because she was a hairdresser in her former life, so it was a bit like being in the salon. Ella’s hair is sooooo sweet now….it’s really curly. We’ll have to change her name to Topsy.
It has been a very long time since Ella has wanted to read or write on her own, but yesterday morning she sat out in her chair and had just started to copy out some of the ‘Worst Witch’ story into her new book ( Dr Wynn’s b’day pressy). I was ecstatic that she was having ‘a go’ on her own, while I got on with the housework. Of course, just then the door opened and in walked three doctors….all of whom were delighted too….but it broke the spell. By the time they had finished being delighted she was fed up and had put the writing book to one side. Fortunately Muriel arrived to save the day, and we managed between us to keep her out of bed until her afternoon snooze time, 1.00 – 2.00.
We waited and waited for the physio staff to arrive, until eventually Rachel rang down and found that they were not coming, so I decided that another sit out of bed was in order. It didn’t go down very well ( what do you know Nanna?) but it all worked very well in the end. Muriel came again and finished making a card for Jackson, who’s next door. ( Jackson is one of the ‘originals’ from Pendlebury and is back in for a while). Ella wanted to make him a card, so they used her new card making kit! Then, of course, she wanted to deliver it herself, so with Rachel’s help we unplugged her and we walked next door. They were ‘expecting us' and Jackson rushed off with his card and hid….as any 4yr old boy would do. Ella was a little star, and we made it all the way back in one piece, too. Bambi legs !!!! They’ve not been used for a couple of days.
I really felt sorry for the staff, the 2 Rachels and Letitia, yesterday. They were very short staffed, with only the three of them and 7 cubicles to run. When I’m sitting here, in need of a break, and there is no one to sit with Ella for 10mins, I feel really fed up. But yesterday was a nightmare for them, with no one to give them time for a meal break, so they did a long day ( 8.00am/9.00pm) with hardly any time to eat at all. They are real ‘angels’, all of them. I mean, Ella is a full time job on her own….but another 6 added on top must be very hard work. At least I had time off while Muriel was here, and Letitia sat in while I popped out to get some tea. Ella insisted that I should get a pudding too, so she ended up feeding me apple pie and custard….mmmmm!
Mummy’s coming back today, with Sam, and we have got the meeting as well, to discuss future care plans for Ella. I know that Andrea and June are bringing them back, so that will make life much easier.
It’s 7.15am already, and I can hear the Staff changing over for the day, so I’ll get this posted and say bye for now.
Lots of love and as usual all our thanks for your loving support and prayers.
Ella and Annette.xx
PS Hi Sam and Grace. It’s lovely to hear from you again and we look forward, very much ,to seeing you again.xx
PPS Come on Mummy Waite, don’t be trying to fool us. We know you are like the mermaid in ‘Splash’ really.x
Good morning, it’s 6.00am and all’s well. Ella is sleeping and is actually making little mousy noises, so I guess it must be a good dream. I think we’ve had a good night! We’ve been up a few times, but nothing too bad….just a grumpy Nanna I think! I’ve just been and made myself cuppa………it’s well and truly forbidden, but Kelly turned a blind eye………so I’m sat in heaven sipping a hot, sweet drink.
Ella had another super day yesterday. She did have a very long lie in though, so that by the time we were up and dressed it was 11.00am. We have got a new ‘auxi’ called Letitia….only very young….and she helped us to wash our hair. Ella was delighted, because she was a hairdresser in her former life, so it was a bit like being in the salon. Ella’s hair is sooooo sweet now….it’s really curly. We’ll have to change her name to Topsy.
It has been a very long time since Ella has wanted to read or write on her own, but yesterday morning she sat out in her chair and had just started to copy out some of the ‘Worst Witch’ story into her new book ( Dr Wynn’s b’day pressy). I was ecstatic that she was having ‘a go’ on her own, while I got on with the housework. Of course, just then the door opened and in walked three doctors….all of whom were delighted too….but it broke the spell. By the time they had finished being delighted she was fed up and had put the writing book to one side. Fortunately Muriel arrived to save the day, and we managed between us to keep her out of bed until her afternoon snooze time, 1.00 – 2.00.
We waited and waited for the physio staff to arrive, until eventually Rachel rang down and found that they were not coming, so I decided that another sit out of bed was in order. It didn’t go down very well ( what do you know Nanna?) but it all worked very well in the end. Muriel came again and finished making a card for Jackson, who’s next door. ( Jackson is one of the ‘originals’ from Pendlebury and is back in for a while). Ella wanted to make him a card, so they used her new card making kit! Then, of course, she wanted to deliver it herself, so with Rachel’s help we unplugged her and we walked next door. They were ‘expecting us' and Jackson rushed off with his card and hid….as any 4yr old boy would do. Ella was a little star, and we made it all the way back in one piece, too. Bambi legs !!!! They’ve not been used for a couple of days.
I really felt sorry for the staff, the 2 Rachels and Letitia, yesterday. They were very short staffed, with only the three of them and 7 cubicles to run. When I’m sitting here, in need of a break, and there is no one to sit with Ella for 10mins, I feel really fed up. But yesterday was a nightmare for them, with no one to give them time for a meal break, so they did a long day ( 8.00am/9.00pm) with hardly any time to eat at all. They are real ‘angels’, all of them. I mean, Ella is a full time job on her own….but another 6 added on top must be very hard work. At least I had time off while Muriel was here, and Letitia sat in while I popped out to get some tea. Ella insisted that I should get a pudding too, so she ended up feeding me apple pie and custard….mmmmm!
Mummy’s coming back today, with Sam, and we have got the meeting as well, to discuss future care plans for Ella. I know that Andrea and June are bringing them back, so that will make life much easier.
It’s 7.15am already, and I can hear the Staff changing over for the day, so I’ll get this posted and say bye for now.
Lots of love and as usual all our thanks for your loving support and prayers.
Ella and Annette.xx
PS Hi Sam and Grace. It’s lovely to hear from you again and we look forward, very much ,to seeing you again.xx
PPS Come on Mummy Waite, don’t be trying to fool us. We know you are like the mermaid in ‘Splash’ really.x
Day +194 ( Tues 18th)
Hi again, and once more it’s early morning….well actually not too early….about 7.00am. Ella and I have had just had a great night. She has fallen back to sleep so I’m taking this chance to catch up.
I left you on Sat morning? The tree of us had a fib morning and afternoon. Ella had a lovely bath and hair wash….all on the bed of course….we listened to music and sang….and then Sally did Ella’s nails. It was lovely, just like old times only better. ( talking of music….Sally has been ‘chewing at the bit’ to get some funky music reloaded onto Ella’s ipod. It was accidentally wiped off a while ago, so we have been managing with Nanna’s CDs from the car. There has been frantic downloading of CD’s …..anything to save us from The Eagles and David Gray….again. )
Damian took over that afternoon, and his Mum came to stay too. They brought Sam back….Sally and Ella were soooooo looking forward to seeing him ( me too of course). They had a little play with Ella’s new toy….hamsters. I guess all the little ones out there will know what I mean. We’d already got the garage, car and a hamster from last weekend, and Damian’s family added to that with the house and play park. Of course as soon as Sam saw it he wanted a hamster too…..I think you can guess where Mummy headed to on Sunday, back in Southport? It’s big and begins with ‘A’?
Sally and I spent Sat. night at home and then headed back here. It breaks Sally’s heart to leave Sam, but Damian couldn’t manage another night and one parent had to be here to sign the consent form, for Ella’s theatre trip the next day! So, off we set again and we had a really good night.
Ella was first on the list for Monday morning, so we were all up and ready by 9.00am……..and I mean ready. Ella insisted on a full wash and brush up, including hair and teeth! I brought her a selection of theatre gowns from the linen store and she choose a fetching ‘rocking horse’ design, and then we waited! The porter and trolly arrived, we began to load Ella onto it….and he had a phone call. Ella was going to be 2nd!!!!!!. He must have seen all our faces, because he scooted off quick and left his trolly here. He was back very quickly actually, and she went in about 11.00am. and was back in bed by 1.30pm. The surgeon met us outside the theatre and said that things are looking better than last time…..what a lift it gives you, to hear news like that. A lift to everyone…..but none more so than to our dear little girl. It really boosts her confidence!
Later in the afternoon, when Ella was properly awake etc, Sally set off back to Southport to spend a couple of much needed days with Sam. There is a multi disciplinary meeting on Weds, here, so she is coming back then and bringing Sam back too……with his hamsters.
That just about brings us to now. Ella and I had a super evening watching HSM and eating sushi ( well Ella was feeding me it) and then we had an early night. When she sleeps peacefully it’s wonderful. Her body is completely relaxed and she stretches out! The physios would be delighted to see her now…….but we’ll see them later this afternoon no doubt.
I’m going to finish now and post this news. I’ll try for new ‘snaps’ today so that you can see how we are getting on.
As usual, all our thanks for your loving prayers and support.
Ella and Annette.xx
PS Hi Janet. Great to hear from you.x
PPS Hi the Waites….lovely to hear your newsx
PPPS Thanks to Andrea and June….I hope you got lots of licks from Bumpy? See you Weds.x
PPPPS Thanks to Reg for holding the fort at home, with Daisy and Bumpy….not always easy when you are working shifts too.xx
Hi again, and once more it’s early morning….well actually not too early….about 7.00am. Ella and I have had just had a great night. She has fallen back to sleep so I’m taking this chance to catch up.
I left you on Sat morning? The tree of us had a fib morning and afternoon. Ella had a lovely bath and hair wash….all on the bed of course….we listened to music and sang….and then Sally did Ella’s nails. It was lovely, just like old times only better. ( talking of music….Sally has been ‘chewing at the bit’ to get some funky music reloaded onto Ella’s ipod. It was accidentally wiped off a while ago, so we have been managing with Nanna’s CDs from the car. There has been frantic downloading of CD’s …..anything to save us from The Eagles and David Gray….again. )
Damian took over that afternoon, and his Mum came to stay too. They brought Sam back….Sally and Ella were soooooo looking forward to seeing him ( me too of course). They had a little play with Ella’s new toy….hamsters. I guess all the little ones out there will know what I mean. We’d already got the garage, car and a hamster from last weekend, and Damian’s family added to that with the house and play park. Of course as soon as Sam saw it he wanted a hamster too…..I think you can guess where Mummy headed to on Sunday, back in Southport? It’s big and begins with ‘A’?
Sally and I spent Sat. night at home and then headed back here. It breaks Sally’s heart to leave Sam, but Damian couldn’t manage another night and one parent had to be here to sign the consent form, for Ella’s theatre trip the next day! So, off we set again and we had a really good night.
Ella was first on the list for Monday morning, so we were all up and ready by 9.00am……..and I mean ready. Ella insisted on a full wash and brush up, including hair and teeth! I brought her a selection of theatre gowns from the linen store and she choose a fetching ‘rocking horse’ design, and then we waited! The porter and trolly arrived, we began to load Ella onto it….and he had a phone call. Ella was going to be 2nd!!!!!!. He must have seen all our faces, because he scooted off quick and left his trolly here. He was back very quickly actually, and she went in about 11.00am. and was back in bed by 1.30pm. The surgeon met us outside the theatre and said that things are looking better than last time…..what a lift it gives you, to hear news like that. A lift to everyone…..but none more so than to our dear little girl. It really boosts her confidence!
Later in the afternoon, when Ella was properly awake etc, Sally set off back to Southport to spend a couple of much needed days with Sam. There is a multi disciplinary meeting on Weds, here, so she is coming back then and bringing Sam back too……with his hamsters.
That just about brings us to now. Ella and I had a super evening watching HSM and eating sushi ( well Ella was feeding me it) and then we had an early night. When she sleeps peacefully it’s wonderful. Her body is completely relaxed and she stretches out! The physios would be delighted to see her now…….but we’ll see them later this afternoon no doubt.
I’m going to finish now and post this news. I’ll try for new ‘snaps’ today so that you can see how we are getting on.
As usual, all our thanks for your loving prayers and support.
Ella and Annette.xx
PS Hi Janet. Great to hear from you.x
PPS Hi the Waites….lovely to hear your newsx
PPPS Thanks to Andrea and June….I hope you got lots of licks from Bumpy? See you Weds.x
PPPPS Thanks to Reg for holding the fort at home, with Daisy and Bumpy….not always easy when you are working shifts too.xx
Saturday 15 August 2009
Day +191 (Sat16th)
Good morning and hello from us here in Manchester. It’s around 6.00am and I am writing from our room. I’ve just got here after a night in the dormitory and both Sally and Ella are sound asleep. The night staff have just assured me that they have both had a restful night.
We have come to the end of an eventful week, as you may have guessed by the lack of letters to you. It has been full of ups and downs, but looking back now it has passed very quickly thank goodness, and we are on the way back up. I think we left you with Ella due to go down to theatre? Well that didn’t happen again, because there was a delay in the theatre and they ran out of time. Just as we found out that news we had an emergency in here, when Ella had a seizure. It was very frightening at the time, as the crash team rushed in and took over. Within an hour Ella had been down for a brain scan, Daddy and Auntie Rachael were here and Dr Wynn had come in from home. A further scan, the following morning as well, showed that more than likely Ella had showed a reaction to one of the drugs she has been on since her transplant, and the immediate treatment has been to stop it.
Ella has recovered well from that night. Her eyesight was affected to begin with and she was disorientated, but as the days have gone on she has made a very good recovery and yesterday was our best day for quite a while. We had a visit from Linda, who works with the Rainbow Trust. She came to introduce herself to Ella and us and she stayed for an hour, painting a fan with Ella. Linda will be coming each week now, to add support for Ella, Sam and the whole family…..playing with Ella ( and Sam if he is here) , giving the family ‘time off’ , in fact helping in any way she can. If we lived in this area she would be visiting at home too, but we are out of the area unfortunately. However, the Trust does have a super holiday home, in Northumberland, which we can all go to when Ella comes home. Linda’s visit was topped off with a visit from Kate, who worked on the computer with Ella, designing clothes. It was quite a turn around from three days earlier, with Ella sat up and joining in. We finished the afternoon off with physio!!!! It was a short trip out in the chariot, over the bridge and back, followed by a ‘sit out’ in the big chair. ( I was left behind to remake the bed….but I got these snaps as they went along the walkway facing Ella’s room. You can’t see her very well I’m afraid, but she is in there!!!)
Auntie Margaret is home from Spain, and is staying with Sally for a few days. She and Reg came to see Ella a couple of days ago and she brought some decorated letters spelling ELLABELLA which are now stuck on the door!!! The fan is on the bathroom door and we have got a few ‘adornments’ around the room. It’s beginning to look more child friendly in here…but still no telly. We are relying on DVD’s ,but even they seem to be ‘coming round’ more quickly now, so much so that Mrs Doubtfire is back, after her world cruise!!
Today Daddy is taking over for the night, so Sally and I are coming home …..to do our washing! So watch out Southport….the Eatons are in town!!!
We’ll say bye for now. The pair of them are awake and it’s time to get ‘the show on the road’ once more.
We send you all lots of love and thanks, for your loving prayers and support.
Ella, Sally and Annette.xxx
Good morning and hello from us here in Manchester. It’s around 6.00am and I am writing from our room. I’ve just got here after a night in the dormitory and both Sally and Ella are sound asleep. The night staff have just assured me that they have both had a restful night.
We have come to the end of an eventful week, as you may have guessed by the lack of letters to you. It has been full of ups and downs, but looking back now it has passed very quickly thank goodness, and we are on the way back up. I think we left you with Ella due to go down to theatre? Well that didn’t happen again, because there was a delay in the theatre and they ran out of time. Just as we found out that news we had an emergency in here, when Ella had a seizure. It was very frightening at the time, as the crash team rushed in and took over. Within an hour Ella had been down for a brain scan, Daddy and Auntie Rachael were here and Dr Wynn had come in from home. A further scan, the following morning as well, showed that more than likely Ella had showed a reaction to one of the drugs she has been on since her transplant, and the immediate treatment has been to stop it.
Ella has recovered well from that night. Her eyesight was affected to begin with and she was disorientated, but as the days have gone on she has made a very good recovery and yesterday was our best day for quite a while. We had a visit from Linda, who works with the Rainbow Trust. She came to introduce herself to Ella and us and she stayed for an hour, painting a fan with Ella. Linda will be coming each week now, to add support for Ella, Sam and the whole family…..playing with Ella ( and Sam if he is here) , giving the family ‘time off’ , in fact helping in any way she can. If we lived in this area she would be visiting at home too, but we are out of the area unfortunately. However, the Trust does have a super holiday home, in Northumberland, which we can all go to when Ella comes home. Linda’s visit was topped off with a visit from Kate, who worked on the computer with Ella, designing clothes. It was quite a turn around from three days earlier, with Ella sat up and joining in. We finished the afternoon off with physio!!!! It was a short trip out in the chariot, over the bridge and back, followed by a ‘sit out’ in the big chair. ( I was left behind to remake the bed….but I got these snaps as they went along the walkway facing Ella’s room. You can’t see her very well I’m afraid, but she is in there!!!)
Auntie Margaret is home from Spain, and is staying with Sally for a few days. She and Reg came to see Ella a couple of days ago and she brought some decorated letters spelling ELLABELLA which are now stuck on the door!!! The fan is on the bathroom door and we have got a few ‘adornments’ around the room. It’s beginning to look more child friendly in here…but still no telly. We are relying on DVD’s ,but even they seem to be ‘coming round’ more quickly now, so much so that Mrs Doubtfire is back, after her world cruise!!
Today Daddy is taking over for the night, so Sally and I are coming home …..to do our washing! So watch out Southport….the Eatons are in town!!!
We’ll say bye for now. The pair of them are awake and it’s time to get ‘the show on the road’ once more.
We send you all lots of love and thanks, for your loving prayers and support.
Ella, Sally and Annette.xxx
PS Who thinks the hospital looks like a prison? be honest now!!!!
Monday 10 August 2009
Day +185 (Mon)
Hi to everyone. Here we are back again….actually on the very next day. It’s great to be writing on the very next day….if you know what I mean.
Ella and I had a very good night, well as good as you can have in hospital. We both had quite a lot of sleep. In fact I was up and ready for when Dr Wynn did his first round after his short holiday in Scotland. He had just walked in the room, with his entourage, when Ella’s line decided to bleed back, all on its’ own. When she sat up she was in a big, red puddle. He did say he’d come back, but Ella, ever the drama queen, wanted him to stay….so he did. In all the fuss it was only as he was leaving that I noticed the bump on his head. Ali told me later that he had bumped it on the boot of the car, ouch!
All this meant that we had to get Ella up earlier than usual, which all lead to her having a grumpy morning. Even Emily and Muriel couldn’t help. She just wanted to stay in bed and go to sleep……..
Of course we have physio in the afternoon….so we had to be up and about for that. We went down to their department and Ella played on the Wii again, this time she sat on a sort of balance board and had to negotiate rolling balls into holes. She was excellent as well !!
Ella is going down to theatre again tomorrow, to have the scope she missed out on last week. As far as I know she is properly ‘booked in’ as it were, and not in the emergency list. At least we know she will going during the afternoon. Sally is coming back tomorrow, so that is super for both of them…..lots of cuddles all round.
Tonight we watched two of Ella’s favourites, Matilda and Ella ( one of the Princess movies). Needless to say they finished late, so I am now sat here at almost midnight. Ella is fast asleep, but I just know that the second I put my head on the pillow she will wake up. I’ve got everything crossed for a good night.
We will finish now and let you know tomorrow how the ‘scopes went,
Night night to everyone, and as usual our thanks for your loving support and prayers.
Ella and Annette.xx
Hi to everyone. Here we are back again….actually on the very next day. It’s great to be writing on the very next day….if you know what I mean.
Ella and I had a very good night, well as good as you can have in hospital. We both had quite a lot of sleep. In fact I was up and ready for when Dr Wynn did his first round after his short holiday in Scotland. He had just walked in the room, with his entourage, when Ella’s line decided to bleed back, all on its’ own. When she sat up she was in a big, red puddle. He did say he’d come back, but Ella, ever the drama queen, wanted him to stay….so he did. In all the fuss it was only as he was leaving that I noticed the bump on his head. Ali told me later that he had bumped it on the boot of the car, ouch!
All this meant that we had to get Ella up earlier than usual, which all lead to her having a grumpy morning. Even Emily and Muriel couldn’t help. She just wanted to stay in bed and go to sleep……..
Of course we have physio in the afternoon….so we had to be up and about for that. We went down to their department and Ella played on the Wii again, this time she sat on a sort of balance board and had to negotiate rolling balls into holes. She was excellent as well !!
Ella is going down to theatre again tomorrow, to have the scope she missed out on last week. As far as I know she is properly ‘booked in’ as it were, and not in the emergency list. At least we know she will going during the afternoon. Sally is coming back tomorrow, so that is super for both of them…..lots of cuddles all round.
Tonight we watched two of Ella’s favourites, Matilda and Ella ( one of the Princess movies). Needless to say they finished late, so I am now sat here at almost midnight. Ella is fast asleep, but I just know that the second I put my head on the pillow she will wake up. I’ve got everything crossed for a good night.
We will finish now and let you know tomorrow how the ‘scopes went,
Night night to everyone, and as usual our thanks for your loving support and prayers.
Ella and Annette.xx
Sunday 9 August 2009
Day 184 (Sun 9th)
We are still here…..we haven’t forgotten you all….just had another breathing space that’s all. Lots to tell you though, so I’ll get on with it.
Ella has had a tough week, all in all. Yes the ultra sound did happen last Monday….ready for theatre…but the theatre visit didn’t happen, not until late Wednesday night, and then it was without the ‘scopes. She went down so late that the gastro team had finished for the day. I don’t know!!! What a performance!!!! By this time the canellas had all packed in and it was a matter of her having to go down to have her line done straight away. Rachael was here with Ella and Sally and I were phoning all day Weds, from Southport, to check whether or not she had ‘gone down’. What a relief to hear that she was ‘back up’ at about 10.00pm, plus new working line.
Rachael has had a few days with Ella and we have been looking after the other four rascals! It’s good for us all to have a change around, and it doesn’t do the children any harm either…..all of them! I know that Rachael had been encouraging Ella to join in as much as she was able, not easy with wonky canellas! Meanwhile Sally, the children and I have been to an ‘event’ on Bedford Park….we chatted with the Mayor! We have been to Farmer Ted’s for the day, plus picnic ( thanks Reggie ) and we have built a wigwam! I guess you will all want to know about the wigwam? Well briefly, I promised the kids they could have a paddling pool and Sally promised them they could make a wigwam. They were both supposed to be the ‘let’s stay at home for the day….it’s cheaper’ idea. You know us though….we ended up with the biggest paddling pool and the tallest wigwam in Birkdale. The pool took three of us half an hour, to half fill, and the wigwam took 2 days to finish. Who sat in it after all that effort? Poppy!!!!!!!! ( Rachael and John’s bassett hound ).
Daddy changed over with Rachael yesterday, and I have changed over with him today. It’s all go isn’t it? I wanted to bring Ella a little pool back with me….I have been looking for a blow up baby pool, for her to paddle her feet in. I found one at last in Argos, and Damian blew it up before he left. It’s rather larger than I thought…ummm
It’s round about 10.30pm and my eyes are drooping. Ella’s aren’t….she’s just had a cuppa and half a biscuit dipped in! ( Nanna’s aren’t allowed to have hot drinks in the room don’t forget.) We are going to say bye for now and write more tomorrow. I may even be able to get a few snaps….although Ella has become quite camera shy just lately.
So, night night and as usual all our thanks for your loving support and prayers.
Ella and Annette.xx
PS Belated Happy Birthday to Simon!x
PPS Great to hear all your holiday news….keep it coming.
We are still here…..we haven’t forgotten you all….just had another breathing space that’s all. Lots to tell you though, so I’ll get on with it.
Ella has had a tough week, all in all. Yes the ultra sound did happen last Monday….ready for theatre…but the theatre visit didn’t happen, not until late Wednesday night, and then it was without the ‘scopes. She went down so late that the gastro team had finished for the day. I don’t know!!! What a performance!!!! By this time the canellas had all packed in and it was a matter of her having to go down to have her line done straight away. Rachael was here with Ella and Sally and I were phoning all day Weds, from Southport, to check whether or not she had ‘gone down’. What a relief to hear that she was ‘back up’ at about 10.00pm, plus new working line.
Rachael has had a few days with Ella and we have been looking after the other four rascals! It’s good for us all to have a change around, and it doesn’t do the children any harm either…..all of them! I know that Rachael had been encouraging Ella to join in as much as she was able, not easy with wonky canellas! Meanwhile Sally, the children and I have been to an ‘event’ on Bedford Park….we chatted with the Mayor! We have been to Farmer Ted’s for the day, plus picnic ( thanks Reggie ) and we have built a wigwam! I guess you will all want to know about the wigwam? Well briefly, I promised the kids they could have a paddling pool and Sally promised them they could make a wigwam. They were both supposed to be the ‘let’s stay at home for the day….it’s cheaper’ idea. You know us though….we ended up with the biggest paddling pool and the tallest wigwam in Birkdale. The pool took three of us half an hour, to half fill, and the wigwam took 2 days to finish. Who sat in it after all that effort? Poppy!!!!!!!! ( Rachael and John’s bassett hound ).
Daddy changed over with Rachael yesterday, and I have changed over with him today. It’s all go isn’t it? I wanted to bring Ella a little pool back with me….I have been looking for a blow up baby pool, for her to paddle her feet in. I found one at last in Argos, and Damian blew it up before he left. It’s rather larger than I thought…ummm
It’s round about 10.30pm and my eyes are drooping. Ella’s aren’t….she’s just had a cuppa and half a biscuit dipped in! ( Nanna’s aren’t allowed to have hot drinks in the room don’t forget.) We are going to say bye for now and write more tomorrow. I may even be able to get a few snaps….although Ella has become quite camera shy just lately.
So, night night and as usual all our thanks for your loving support and prayers.
Ella and Annette.xx
PS Belated Happy Birthday to Simon!x
PPS Great to hear all your holiday news….keep it coming.
Monday 3 August 2009
Day +177 ( Sun 2nd)
Hi and welcome back. Ella and I are here again. It is very late ( 11.30pm) Sunday night and we are just settling down for a peaceful night I hope.
When I got back today Ella was fast asleep….in fact she missed Daddy going. She woke about 5.00pm after a very sleepy day, and that was the beginning of a very happy evening….one of our best so far. Ella was full of beans and very anxious that I should eat and enjoy myself. We both had a few nibbles at this and that. In the end Ella was asking the nurses if they would please bring something for ‘my Nanna’ to eat. We watched 2 films and had a good chat. Last of all I took Ella’s nail varnish off her toes because she is back in theatre tomorrow.
I think I told you that Ella had a temporary line in her groin? Well unfortunately that packed in on Saturday night when Daddy was here, so she has got canellas all over her at the moment (feet and hands) which have to be replaced tomorrow. Soooooo it’s no drinks after 3.00am. While Ella is ‘under’ they are going to do another ‘scope’ to see how her tummy is getting on and an ultra sound on her neck so it’s important that she has been left for tomorrow, as opposed to rushing to replace just the line today. What a brave little girl she is.
Ella’s hair is growing back thick and fast now………..and…..it’s still quite dark and dare I say it a little bit wavy? She takes great pride at the moment in having it shampooed….with conditioner of course. It’s quite a struggle on the bed with only a small washing up bowl and a cup. BUT you know us girls we can do almost anything almost anywhere, can’t we?
I’m going to finish now and get some zzzzzzzzzz’s in while Ella is asleep, we may have an early start tomorrow.
Night night and lots of love. As usual we send you all our thanks for all your support and loving prayers.
Ella and Annette.xx
Hi and welcome back. Ella and I are here again. It is very late ( 11.30pm) Sunday night and we are just settling down for a peaceful night I hope.
When I got back today Ella was fast asleep….in fact she missed Daddy going. She woke about 5.00pm after a very sleepy day, and that was the beginning of a very happy evening….one of our best so far. Ella was full of beans and very anxious that I should eat and enjoy myself. We both had a few nibbles at this and that. In the end Ella was asking the nurses if they would please bring something for ‘my Nanna’ to eat. We watched 2 films and had a good chat. Last of all I took Ella’s nail varnish off her toes because she is back in theatre tomorrow.
I think I told you that Ella had a temporary line in her groin? Well unfortunately that packed in on Saturday night when Daddy was here, so she has got canellas all over her at the moment (feet and hands) which have to be replaced tomorrow. Soooooo it’s no drinks after 3.00am. While Ella is ‘under’ they are going to do another ‘scope’ to see how her tummy is getting on and an ultra sound on her neck so it’s important that she has been left for tomorrow, as opposed to rushing to replace just the line today. What a brave little girl she is.
Ella’s hair is growing back thick and fast now………..and…..it’s still quite dark and dare I say it a little bit wavy? She takes great pride at the moment in having it shampooed….with conditioner of course. It’s quite a struggle on the bed with only a small washing up bowl and a cup. BUT you know us girls we can do almost anything almost anywhere, can’t we?
I’m going to finish now and get some zzzzzzzzzz’s in while Ella is asleep, we may have an early start tomorrow.
Night night and lots of love. As usual we send you all our thanks for all your support and loving prayers.
Ella and Annette.xx
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