Monday 26th October 2009
Dear Friends,
Our dearest, precious Ella passed away peacefully in her sleep on Saturday ( 24th October ). Her bravery and courage has been an inspiration to everyone. She is a very special little girl and she will be remembered for ever.
Thank you, as always, for your loving support and prayers.
Annette.
Monday 26 October 2009
Tuesday 13 October 2009
Day +250 ( Tues 15th Oct)
Good morning and welcome back. It’s actually 5.ooam on Weds morning now, but all is still dark and it still feels like last night, if you know what I mean. I did start this last night but I only got as far as the day and date and gave up. Ella had spiked a temp so I was on cooling down duty etc. We are not allowed to have elec fans….but who needs a fan when you have 3 sheets of A4 and a Nanna to waft you?
Yesterday we woke up, after a really settled night. Ella slept for 2/3hrs at a time and I felt as though it was my birthday when I woke up. Ella didn’t want to wake up at all really, and by 10.30am Kirsty and I decided that we would be brave and face the tiger…….we had a slot to go down to OT, to do some painting at 11.30am.Ella on the other hand had different plans, and really wanted to have a duvet day. We compromised on a very short wash (no hair) and we just made it in time. Liz then had the unenviable task of persuading Ella that she did really want to paint plant pots, and not stay in bed. As you can see from the photos we managed to get it painted, between us. It was very much a team effort, although by the smile on Kirsty’s face I think she was really enjoying it. Ella is planting it up next time!
When we got back Ella flopped. She was completely ‘plum tuckered out’. Teacher Liz arrived and read a couple of stories and that was it for the next couple of hours. Because Ella had spiked a temp the usual blood samples were needed, but as usual her lines were being naughty, so along came a Dr to take a sample from her hand. ( no Dr Gorgeous today ladies. I did have my camera ready though). Why am I telling you all this?....Oh yes, Ella was allowed to choose a pressy from the pressy box, for being brave, and chose one of those ‘archaeological dig kits’. The ‘bones’ are buried in a small lump of plaster and you have to dig them out with a tiny chisel, mallet and brush. We’ve had them before actually, from the museum, so Ella knew what to do but Ali and Kirsty didn’t. It wasn’t long before Ali was into it!
During the afternoon the ‘telly lady’ did come back as she had promised, and it has been re sited facing the bed, properly! It’s quite a relief to be able take up our long cable and to put the ‘sputnik’ away. I had a bit of a fight to fit the TV from home back in its box. It was like a Chinese puzzle, but I did it AND I got the base off it too, so that will be some more clutter to take home. The new TV is almost identical to mine and I must say that the picture quality is really good. There is only one problem……ITV isn’t one of the channel choices for some reason. What we are going to do without Corrie and X Factor I don’t know. I have told her about it and she promised to ring the’ provider company’ to get that channel put back on. Apparently only one channel is supposed to have been censored…..one that the male Drs would like, she said. Mmmm. It’s another 'watch this space' situation, I think!
I’m going to finish now and get this posted. Although it’s 6.00am now there may be a chance for a few more zzzz’s?
Night night, lots of love and all our usual thanks for your loving prayers and support.
Ella and Annette.xx
Good morning and welcome back. It’s actually 5.ooam on Weds morning now, but all is still dark and it still feels like last night, if you know what I mean. I did start this last night but I only got as far as the day and date and gave up. Ella had spiked a temp so I was on cooling down duty etc. We are not allowed to have elec fans….but who needs a fan when you have 3 sheets of A4 and a Nanna to waft you?
Yesterday we woke up, after a really settled night. Ella slept for 2/3hrs at a time and I felt as though it was my birthday when I woke up. Ella didn’t want to wake up at all really, and by 10.30am Kirsty and I decided that we would be brave and face the tiger…….we had a slot to go down to OT, to do some painting at 11.30am.Ella on the other hand had different plans, and really wanted to have a duvet day. We compromised on a very short wash (no hair) and we just made it in time. Liz then had the unenviable task of persuading Ella that she did really want to paint plant pots, and not stay in bed. As you can see from the photos we managed to get it painted, between us. It was very much a team effort, although by the smile on Kirsty’s face I think she was really enjoying it. Ella is planting it up next time!
When we got back Ella flopped. She was completely ‘plum tuckered out’. Teacher Liz arrived and read a couple of stories and that was it for the next couple of hours. Because Ella had spiked a temp the usual blood samples were needed, but as usual her lines were being naughty, so along came a Dr to take a sample from her hand. ( no Dr Gorgeous today ladies. I did have my camera ready though). Why am I telling you all this?....Oh yes, Ella was allowed to choose a pressy from the pressy box, for being brave, and chose one of those ‘archaeological dig kits’. The ‘bones’ are buried in a small lump of plaster and you have to dig them out with a tiny chisel, mallet and brush. We’ve had them before actually, from the museum, so Ella knew what to do but Ali and Kirsty didn’t. It wasn’t long before Ali was into it!
During the afternoon the ‘telly lady’ did come back as she had promised, and it has been re sited facing the bed, properly! It’s quite a relief to be able take up our long cable and to put the ‘sputnik’ away. I had a bit of a fight to fit the TV from home back in its box. It was like a Chinese puzzle, but I did it AND I got the base off it too, so that will be some more clutter to take home. The new TV is almost identical to mine and I must say that the picture quality is really good. There is only one problem……ITV isn’t one of the channel choices for some reason. What we are going to do without Corrie and X Factor I don’t know. I have told her about it and she promised to ring the’ provider company’ to get that channel put back on. Apparently only one channel is supposed to have been censored…..one that the male Drs would like, she said. Mmmm. It’s another 'watch this space' situation, I think!
I’m going to finish now and get this posted. Although it’s 6.00am now there may be a chance for a few more zzzz’s?
Night night, lots of love and all our usual thanks for your loving prayers and support.
Ella and Annette.xx
PS Hope you like the photos.
Monday 12 October 2009
Day +249 (Mon 12th Oct)
Hi. We’re back again. It’s just after midnight and I’m taking this quiet time to catch up on today’s events. Ella has woken up for a ‘pit stop’ so while she settles back down again I’m having a quick cuppa and a bag of S. and V. crisps, made all the more special as I’m doing it by the light of the computer. She has had a wonderfully, unbroken sleep from 7.15pm, so I’m hoping she will have another until 7.15am. Somehow I don’t think so though!
We have had a good day today, even though we had a very restless night last night. There were times today when I thought I would fall asleep on the spot! They were only blips though, and a good sit down and restful evening soon pick you up again don’t they? We started the day early, with a bed wash for Ella, so that when Linda arrived we were able to get her out of bed together.
Ella had been looking forwards to Linda’s visit, because they were going to make a special ‘crown flan’ together. True to her word Linda brought all the ingredients to keep the three of us busy for an hour….and the results were magnificent, as you can see from the photos, not to mention great to eat too.
Soon after Linda had left Liz arrived for Ella’s lesson, with another treat for her….. home grown raspberries. How kind it is of everyone to remember Ella, even when they are off duty! We spent almost another hour talking about fish and looking at pictures of them, ready for Ella to try some drawings to make a wall display of. Our underwater adventure story will have a super background when it is displayed then. Just as Liz was finishing Sam and Mummy arrived and that added a whole new dimension to the fish book, as Sam chatted away about the pictures. It helped motivate Ella a little as well.
Liz left and who should arrive? Yes the physio. Ummm. We had to have a bit of negotiation before Ella set off on her walk to the nurses’ station, but we got there and back, with a rest in between.
Sam had his ‘bloods’ done in here this time. He was very good as well….not one tear. Linda had come back especially to meet him, so he was feeling very proud of himself. Linda will work with the whole family, if we need her to, so today was a good opportunity to meet Sam and to think about a time that when he comes to see Ella, Linda could work with both of them together.
By the time Mummy and Sam were ready to set off home before the rush hour, Ella was really tired and grumpy, and it wasn’t long before she was fast asleep. At this point I need to tell you about the arrival of the new TV!! It came this afternoon during physio, and as we thought, it was set up level with the bed head, so that the child needs to be a contortionist to be able to watch it in bed. There is no doubt about it….there has been no thought, what so ever, put into the planning side of making this a child friendly environment. I don’t think it’s just me, is it, who thinks a TV should be facing you when you watch it? Anyway, it’s facing us now…..I moved it, to where ours was, and at the moment it’s plugged into our ariel. They are coming back tomorrow to try and fix it up in a place facing the bed. There aren’t many places, facing Ella’s bed, to choose from as you can imagine…..so we’ll have to wait and see what they come up with!
I’m going to close now on a much less grumpy note…..we hope you enjoy the photos of Ella and Linda making the ‘piece de resistance’.
Nite nite and lots of love to everyone. Thanks for all your loving prayers and support, as usual.
Ella and Annette.xx
Hi. We’re back again. It’s just after midnight and I’m taking this quiet time to catch up on today’s events. Ella has woken up for a ‘pit stop’ so while she settles back down again I’m having a quick cuppa and a bag of S. and V. crisps, made all the more special as I’m doing it by the light of the computer. She has had a wonderfully, unbroken sleep from 7.15pm, so I’m hoping she will have another until 7.15am. Somehow I don’t think so though!
We have had a good day today, even though we had a very restless night last night. There were times today when I thought I would fall asleep on the spot! They were only blips though, and a good sit down and restful evening soon pick you up again don’t they? We started the day early, with a bed wash for Ella, so that when Linda arrived we were able to get her out of bed together.
Ella had been looking forwards to Linda’s visit, because they were going to make a special ‘crown flan’ together. True to her word Linda brought all the ingredients to keep the three of us busy for an hour….and the results were magnificent, as you can see from the photos, not to mention great to eat too.
Soon after Linda had left Liz arrived for Ella’s lesson, with another treat for her….. home grown raspberries. How kind it is of everyone to remember Ella, even when they are off duty! We spent almost another hour talking about fish and looking at pictures of them, ready for Ella to try some drawings to make a wall display of. Our underwater adventure story will have a super background when it is displayed then. Just as Liz was finishing Sam and Mummy arrived and that added a whole new dimension to the fish book, as Sam chatted away about the pictures. It helped motivate Ella a little as well.
Liz left and who should arrive? Yes the physio. Ummm. We had to have a bit of negotiation before Ella set off on her walk to the nurses’ station, but we got there and back, with a rest in between.
Sam had his ‘bloods’ done in here this time. He was very good as well….not one tear. Linda had come back especially to meet him, so he was feeling very proud of himself. Linda will work with the whole family, if we need her to, so today was a good opportunity to meet Sam and to think about a time that when he comes to see Ella, Linda could work with both of them together.
By the time Mummy and Sam were ready to set off home before the rush hour, Ella was really tired and grumpy, and it wasn’t long before she was fast asleep. At this point I need to tell you about the arrival of the new TV!! It came this afternoon during physio, and as we thought, it was set up level with the bed head, so that the child needs to be a contortionist to be able to watch it in bed. There is no doubt about it….there has been no thought, what so ever, put into the planning side of making this a child friendly environment. I don’t think it’s just me, is it, who thinks a TV should be facing you when you watch it? Anyway, it’s facing us now…..I moved it, to where ours was, and at the moment it’s plugged into our ariel. They are coming back tomorrow to try and fix it up in a place facing the bed. There aren’t many places, facing Ella’s bed, to choose from as you can imagine…..so we’ll have to wait and see what they come up with!
I’m going to close now on a much less grumpy note…..we hope you enjoy the photos of Ella and Linda making the ‘piece de resistance’.
Nite nite and lots of love to everyone. Thanks for all your loving prayers and support, as usual.
Ella and Annette.xx
PS Hi Janet....great to know you are still there. I've some ward news to catch you up on. Jo( Sister jo) finishes on Thurs to have her baby....can you believe it? and Kelly is expecting now too. I was showing Linda some old photos yesterday and she recognised you!x
Sunday 11 October 2009
Day +248 (11th Oct Sun)
Hi and here we are again, back in office , so to speak. It’s 10.30pm and Ella has just had her latest medicines before she settles down for what I hope will be a comfortable sleep. I know from Daddy that she has slept quite well for a couple of nights.
There was quite a change on Friday night….Sam came to stay too. Sally found out from the Family Care Team, by chance, that there is accommodation in the adults’ hospital for families to stay, well at least a child. So, on further investigation it was available on Friday night and when Damian came up he brought Sam with him. It was a treat for Ella and Sam to have breakfast together and a little play, and then he came back with Sally on Saturday afternoon.
There have been changes to Ella’s treatment since last week. Dr Wynn and his team have decided to try Ella on another course of chemo, which she started on Friday. Other drugs have been adjusted too, to fit in with this new move.
While all this has been going on, and more to the point….while I’ve been at home, Sally has tidied up and sorted out Ella’s room. You know us…..we like to live in homely clutter, but as per usual it was getting a little out of hand again. We just don’t like to throw anything away, that’s the problem. When Sally told me that she had unscrewed shelves I was wondering what I would be coming back to!! As it happens all is well. The cupboards are still intact and everywhere looks very nice…..just moved round, one place to the right!
Ella had the lovely idea of making a salad for my tea, so before Damian left I had to dash out to Tesco to buy the bits and bobs. We then spent a great hour cutting it all up, together 5 pieces of fresh fruit to make a fruit salad, all of which I had to eat….. Honestly, my tummy has been fizzing all evening. I must have had all my fruit and veg rations for the whole week!
I’m going to close now and try to catch some sleep while Ella slumbers. I have got my new PJ’s on. They have already raised a couple of eyebrows…Ali’s and Jo’s. They are very posh……coffee coloured satin. What about that then? They feel nice and warm, but I’m a bit worried about the static on the BGC. What do you think? At least if Dr Gorgeous comes along I’ll look presentable, in a Mrs Bucket sort of way.
Night night from here. We send you lots of love and thanks for all your caring wishes and loving prayers.
Ella and Annette.xx
PS Love all your news. Hope you all managed to get to the fireworks displays?
PPS Hope all at St John’s are safe and well. Sue has a matching pair of PJ’s if I remember rightly?x
PPPS We are looking forwards to seeing Sam again tomorrow….he is back here to see the Drs for his checkup and bloods.
PPPPS Hi to Anne. Hope you've managed to log on again?x
Hi and here we are again, back in office , so to speak. It’s 10.30pm and Ella has just had her latest medicines before she settles down for what I hope will be a comfortable sleep. I know from Daddy that she has slept quite well for a couple of nights.
There was quite a change on Friday night….Sam came to stay too. Sally found out from the Family Care Team, by chance, that there is accommodation in the adults’ hospital for families to stay, well at least a child. So, on further investigation it was available on Friday night and when Damian came up he brought Sam with him. It was a treat for Ella and Sam to have breakfast together and a little play, and then he came back with Sally on Saturday afternoon.
There have been changes to Ella’s treatment since last week. Dr Wynn and his team have decided to try Ella on another course of chemo, which she started on Friday. Other drugs have been adjusted too, to fit in with this new move.
While all this has been going on, and more to the point….while I’ve been at home, Sally has tidied up and sorted out Ella’s room. You know us…..we like to live in homely clutter, but as per usual it was getting a little out of hand again. We just don’t like to throw anything away, that’s the problem. When Sally told me that she had unscrewed shelves I was wondering what I would be coming back to!! As it happens all is well. The cupboards are still intact and everywhere looks very nice…..just moved round, one place to the right!
Ella had the lovely idea of making a salad for my tea, so before Damian left I had to dash out to Tesco to buy the bits and bobs. We then spent a great hour cutting it all up, together 5 pieces of fresh fruit to make a fruit salad, all of which I had to eat….. Honestly, my tummy has been fizzing all evening. I must have had all my fruit and veg rations for the whole week!
I’m going to close now and try to catch some sleep while Ella slumbers. I have got my new PJ’s on. They have already raised a couple of eyebrows…Ali’s and Jo’s. They are very posh……coffee coloured satin. What about that then? They feel nice and warm, but I’m a bit worried about the static on the BGC. What do you think? At least if Dr Gorgeous comes along I’ll look presentable, in a Mrs Bucket sort of way.
Night night from here. We send you lots of love and thanks for all your caring wishes and loving prayers.
Ella and Annette.xx
PS Love all your news. Hope you all managed to get to the fireworks displays?
PPS Hope all at St John’s are safe and well. Sue has a matching pair of PJ’s if I remember rightly?x
PPPS We are looking forwards to seeing Sam again tomorrow….he is back here to see the Drs for his checkup and bloods.
PPPPS Hi to Anne. Hope you've managed to log on again?x
Tuesday 6 October 2009
Day+243 ( Tues 6th Oct)
Good morning to everyone. It’s 5.30am here and I’m sat by the light of the fairies, catching up. Ella’s nurse tonight isn’t one of the regular team, but she is a very lovely and experienced lady, Tricia, who has looked after us before. She is also very chatty and will chat to us all through the night, as if it is daytime. It’s quite funny really……it has the very calming effect on Ella, of sending her back to sleep rather than her worrying about going back to sleep , if you know what I mean. It has a different effect on me, as you can see! Last time she came, she brought in some photos of her cats for Ella to enjoy. She really is very nice indeed.
I’ll quickly tell you our news and then try another hour of zzzz’s. Yesterday was a good day. Mummy didn’t come back though. I know she was feeling better, but she has to have 48hrs of no symptoms before she can return. Ella was very disappointed, but we filled our time and the day passed quickly.
Ella had what, Muriel called, a duvet morning! She was fast asleep until well after 11.30am, so I decided to let her sleep on. It gave me time to do some reading and sorting out. Then it was all go! Reg arrived in the middle of our bed bath, with lots of goodies, and he even remade the bed, while Ella sat on my knee for 5mins.
When Liz arrived, to carry on with Ella’s literacy lesson, Ella was less then keen I have to admit. It’s very difficult to motivate a duvet diva…..but she struggled on ( Liz that is). It reminded me of some of my teaching days ! The lesson ended by deciding on Fridays Golden Time recipe….fruit salad.
Next TWO physios arrived, much to Ella’s horror, so there was no escaping the walk out into the corridor. She did really well though, considering walking hasn’t been a priority for a few weeks. The ‘carrot’ was that she could wash my hair if she managed the walk! So, it was into the bathroom, where we managed to fit in Ella in the chariot wielding the shower spray, me kneeling with my head over the bath and Reg in charge of the bleepers! Actually she made a very good job of it. Then it was all change while we washed Ella’s. After a quick shuffle round, Ella hung her head over the back of the chariot over a bowl, which Reg was holding, while I washed her hair. Got the picture? We drew the line at Reg’s!!!!
There was enough staff on yesterday for us to be able to go for a walk. So after Reg had gone, Sarah took us out. We paid another visit to the shop, for drinks and icecreams and then came back via the canteen, where I bought some tea for myself…….veggie stirffry!! We sat back up here then, eating and watching ‘Matilda’, until it was time to watch our favourite TV progs.
What else…oh yes…our pumpkin//skull! It may well become a fish yet, so that it can be part of our under water adventure story we’re writing with Liz. I'll keep you posted.
I’m going to finish now, well almost now. I’ve got to tell you about why the nurses’ hearts are fluttering. Ella spiked a temp during the night and it is the ‘law’ that bloods have to taken, to culture for bugs. Of course her lines weren’t bleeding back, so ‘Dr Gorgeous’ came to do the job. Another one with film star looks AND he made the job look easy. Even Ella was impressed….which at 1.00am with a needle stuck in your foot is quite something!
Anyway, bye bye from us and we send you lots of love and our thanks for all your support and loving prayers.
Ella and Annette.xx
PS Hi to everyone at OLOL. What a ‘todo’ yesterday! x
PPS Hi Becca. Enjoy your trip up here for weekend. Happy birthday Heather.xx
Good morning to everyone. It’s 5.30am here and I’m sat by the light of the fairies, catching up. Ella’s nurse tonight isn’t one of the regular team, but she is a very lovely and experienced lady, Tricia, who has looked after us before. She is also very chatty and will chat to us all through the night, as if it is daytime. It’s quite funny really……it has the very calming effect on Ella, of sending her back to sleep rather than her worrying about going back to sleep , if you know what I mean. It has a different effect on me, as you can see! Last time she came, she brought in some photos of her cats for Ella to enjoy. She really is very nice indeed.
I’ll quickly tell you our news and then try another hour of zzzz’s. Yesterday was a good day. Mummy didn’t come back though. I know she was feeling better, but she has to have 48hrs of no symptoms before she can return. Ella was very disappointed, but we filled our time and the day passed quickly.
Ella had what, Muriel called, a duvet morning! She was fast asleep until well after 11.30am, so I decided to let her sleep on. It gave me time to do some reading and sorting out. Then it was all go! Reg arrived in the middle of our bed bath, with lots of goodies, and he even remade the bed, while Ella sat on my knee for 5mins.
When Liz arrived, to carry on with Ella’s literacy lesson, Ella was less then keen I have to admit. It’s very difficult to motivate a duvet diva…..but she struggled on ( Liz that is). It reminded me of some of my teaching days ! The lesson ended by deciding on Fridays Golden Time recipe….fruit salad.
Next TWO physios arrived, much to Ella’s horror, so there was no escaping the walk out into the corridor. She did really well though, considering walking hasn’t been a priority for a few weeks. The ‘carrot’ was that she could wash my hair if she managed the walk! So, it was into the bathroom, where we managed to fit in Ella in the chariot wielding the shower spray, me kneeling with my head over the bath and Reg in charge of the bleepers! Actually she made a very good job of it. Then it was all change while we washed Ella’s. After a quick shuffle round, Ella hung her head over the back of the chariot over a bowl, which Reg was holding, while I washed her hair. Got the picture? We drew the line at Reg’s!!!!
There was enough staff on yesterday for us to be able to go for a walk. So after Reg had gone, Sarah took us out. We paid another visit to the shop, for drinks and icecreams and then came back via the canteen, where I bought some tea for myself…….veggie stirffry!! We sat back up here then, eating and watching ‘Matilda’, until it was time to watch our favourite TV progs.
What else…oh yes…our pumpkin//skull! It may well become a fish yet, so that it can be part of our under water adventure story we’re writing with Liz. I'll keep you posted.
I’m going to finish now, well almost now. I’ve got to tell you about why the nurses’ hearts are fluttering. Ella spiked a temp during the night and it is the ‘law’ that bloods have to taken, to culture for bugs. Of course her lines weren’t bleeding back, so ‘Dr Gorgeous’ came to do the job. Another one with film star looks AND he made the job look easy. Even Ella was impressed….which at 1.00am with a needle stuck in your foot is quite something!
Anyway, bye bye from us and we send you lots of love and our thanks for all your support and loving prayers.
Ella and Annette.xx
PS Hi to everyone at OLOL. What a ‘todo’ yesterday! x
PPS Hi Becca. Enjoy your trip up here for weekend. Happy birthday Heather.xx
Monday 5 October 2009
Day +242 ( Mon 6th Oct)
Hi and welcome back. I wasn’t absolutely sure that I’d still be here tonight….but here I am. Why? Because the girls brought those Yorkshire ‘eeeebeeeegeeebeee’s’ back with them, AND they have been in bed with them all day, as well!! Actually, they both sounded much better when I spoke to them earlier….only walking wounded now. That ‘ll teach them to go mixing with flamingos!
Anyway, back to Manchester. We are still moving forwards. Dr Wynn was very pleased with the progress Ella has made over the last two weeks. He has tweaked her treatment slightly and plans more meetings soon.
Ella herself, and me of course, had one of those nights! It was very hot in here, Ella was thirsty…. but isn’t allowed a big drink after a certain time ( sore tummy ), I couldn’t sleep on the BGC ( stiff neck), so between us we managed to be awake for most of the night. Each time I made for my bed I must have triggered off Ella’s inbuilt alarm system, and she’d wake up wanting me to stay by her. In the end I got the ‘Fairies’ going and went up another 3 levels. Great therapy!! Funny how children can sleep through anything except us ( grownups) getting into bed isn’t it?
We have had a good though. We are now the proud owners of a papier mache balloon! It was going to be a pumpkin, but the balloon is the pear shaped kind….so now it’s going to be a skull! As you may have guessed our Halloween ‘deccies’ are in the pipeline….
When we had de-glued ourselves Liz came for Ella’s lesson. She was a little late because the hospital school has been ‘Ofsteded’ today, if you can believe it? A new music teacher arrived too , and Ali physio, but by now Ella had given her all and was fast asleep. ( Well she had her eyes firmly closed, anyway. Or maybe it was glue?)
Later on Ella had a lovely idea for us to have a beauty afternoon.
‘What shall we do then Ella?’
‘Well Nanna, we’ll take all your makeup off first and…..’
We did actually have a really nice hour and the end products were very becoming, I must say!
No trips out today sadly. There was only 2 staff on all day which meant we couldn’t leave the ward at all. Dr Wynn was unhappy about it too, but he doesn’t seem to be able to do much about the nurse staffing.
We are now in the peace and quiet of our room again. It is 10.30pm and Ella is fast asleep. I’m blogging, but soon to be sleeping if I can get passed the radar!
Nite nite from us here, and as usual we send you lots of love and thanks for your loving prayers and support.
Ella and Annette.xx
Hi and welcome back. I wasn’t absolutely sure that I’d still be here tonight….but here I am. Why? Because the girls brought those Yorkshire ‘eeeebeeeegeeebeee’s’ back with them, AND they have been in bed with them all day, as well!! Actually, they both sounded much better when I spoke to them earlier….only walking wounded now. That ‘ll teach them to go mixing with flamingos!
Anyway, back to Manchester. We are still moving forwards. Dr Wynn was very pleased with the progress Ella has made over the last two weeks. He has tweaked her treatment slightly and plans more meetings soon.
Ella herself, and me of course, had one of those nights! It was very hot in here, Ella was thirsty…. but isn’t allowed a big drink after a certain time ( sore tummy ), I couldn’t sleep on the BGC ( stiff neck), so between us we managed to be awake for most of the night. Each time I made for my bed I must have triggered off Ella’s inbuilt alarm system, and she’d wake up wanting me to stay by her. In the end I got the ‘Fairies’ going and went up another 3 levels. Great therapy!! Funny how children can sleep through anything except us ( grownups) getting into bed isn’t it?
We have had a good though. We are now the proud owners of a papier mache balloon! It was going to be a pumpkin, but the balloon is the pear shaped kind….so now it’s going to be a skull! As you may have guessed our Halloween ‘deccies’ are in the pipeline….
When we had de-glued ourselves Liz came for Ella’s lesson. She was a little late because the hospital school has been ‘Ofsteded’ today, if you can believe it? A new music teacher arrived too , and Ali physio, but by now Ella had given her all and was fast asleep. ( Well she had her eyes firmly closed, anyway. Or maybe it was glue?)
Later on Ella had a lovely idea for us to have a beauty afternoon.
‘What shall we do then Ella?’
‘Well Nanna, we’ll take all your makeup off first and…..’
We did actually have a really nice hour and the end products were very becoming, I must say!
No trips out today sadly. There was only 2 staff on all day which meant we couldn’t leave the ward at all. Dr Wynn was unhappy about it too, but he doesn’t seem to be able to do much about the nurse staffing.
We are now in the peace and quiet of our room again. It is 10.30pm and Ella is fast asleep. I’m blogging, but soon to be sleeping if I can get passed the radar!
Nite nite from us here, and as usual we send you lots of love and thanks for your loving prayers and support.
Ella and Annette.xx
Day +241 (Oct 5th)
Hi everyone. It’s the early hours of Monday and I’m just going to give you a ‘quicky’ to keep you up to date after the weekend.
As you know Daddy was coming on Frid for a couple of days. The hand over was smooth as ever and he was just in time to help us make pizzas with Liz. Ella was delighted and shortly after that I made an early get away to avoid the Friday traffic.
I know from speaking to Damian the next day that Ella walked out with the physio Ali, and had a comfortable night, and when Grandma arrived the following morning they were ready for a good day. I think Ella was quite sleepy, but they did manage a trip out to the shop etc. Sunday was much the same, but with more trips out. When I arrived back there was plenty of staff on and we had a walk out to the shop at tea time. ( We have discovered that the shop in the maternity hospital stays open later than the one in the children’s hospital, so that’s the one we head for now.)
As for the rest of the family……..we all had a good weekend too. The girls, and the rest of the team, froze in Flamingo Land, but had a great time nonetheless. I, in the meantime, filled my time with washing, drying, TV and meeting up with Claire ( a really good friend whom I haven’t seen for ages) which was an absolute treat, and we promised we would meet again soon.
I’m going to close now and get myself organised ready for the Monday ward round. Knowing my luck I’ll still be in my PJ’s when they appear. I’ve become a little addicted to the ‘Fairies’ game on the laptop…..it’s surprising how much time it takes up when Ella is snoozing.
So, bye for now. Lots of love from we two, and we send you our thanks, as usual, for your loving support and prayers.
Ella and Annette.xx
PS It was lovely to see friends from AMC yesterday. x
Hi everyone. It’s the early hours of Monday and I’m just going to give you a ‘quicky’ to keep you up to date after the weekend.
As you know Daddy was coming on Frid for a couple of days. The hand over was smooth as ever and he was just in time to help us make pizzas with Liz. Ella was delighted and shortly after that I made an early get away to avoid the Friday traffic.
I know from speaking to Damian the next day that Ella walked out with the physio Ali, and had a comfortable night, and when Grandma arrived the following morning they were ready for a good day. I think Ella was quite sleepy, but they did manage a trip out to the shop etc. Sunday was much the same, but with more trips out. When I arrived back there was plenty of staff on and we had a walk out to the shop at tea time. ( We have discovered that the shop in the maternity hospital stays open later than the one in the children’s hospital, so that’s the one we head for now.)
As for the rest of the family……..we all had a good weekend too. The girls, and the rest of the team, froze in Flamingo Land, but had a great time nonetheless. I, in the meantime, filled my time with washing, drying, TV and meeting up with Claire ( a really good friend whom I haven’t seen for ages) which was an absolute treat, and we promised we would meet again soon.
I’m going to close now and get myself organised ready for the Monday ward round. Knowing my luck I’ll still be in my PJ’s when they appear. I’ve become a little addicted to the ‘Fairies’ game on the laptop…..it’s surprising how much time it takes up when Ella is snoozing.
So, bye for now. Lots of love from we two, and we send you our thanks, as usual, for your loving support and prayers.
Ella and Annette.xx
PS It was lovely to see friends from AMC yesterday. x
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