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
Thursday 1 October 2009
Days +236, +237 ( Weds 30th, Thurs 1stOct)
First of all ‘white rabbits’ for today and then it’s another hello from our sauna. Phew!!! It’s 10.15pm on Thurs evening and it is STIFLING in here. Wish that man would get his finger off that knob.
Anyway, down to our news. Ella had a wonderful day yesterday. She was up and alert early, after what I thought was the hottest night I’ve spent for a long time. But it seemed to do Ella good, and after an early wash she was ready for the physio at 10.00am. Our little star got out at the far side of her bed and walked around to this side, to get onto the BGC. We helped and encouraged all the way of course, but we got there. She sat out all day, and was still out when Grandma and Grandad arrived later in the afternoon. By that time Ella was asleep, but she soon woke up and that started a super couple of hours. Ella wanted to go for a walk out to the shop, (with ALL of us) so off we went….Ella in the chariot, Grandma,Grandad, Mummy, Nanna and nurse Ali pushing the drips. The shop is just about big enough to fit us all in! Needless to say we came back with a bag full and a very happy Ella. Only one blip…..Ella’s lines are being naughty, so she is having to have bloods taken from a vein again, whilst they try to clear the lines. Results are ok though, and the ENT Dr is pleased with her ear. She needs it draining again later in the week.
I decided to take a trip home last night and leave Sally to it over night. My day at home has been very nice….lunch with Reg…a spot of shopping to buy Ella some new tops….and a 3hr journey back!!! More about that later.
Ella and Sally’s day has been more difficult, with Ella not feeling too good today. She told Sally quite firmly that she wanted a lie-in and she stayed asleep all morning! Ella has sat out today though, for a little while. She’s sleeping very peacefully now….stretched out and completely relaxed. Lovely! (Some of the medication she is on is very powerful stuff and ’Dr Denise’ decided at teatime to leave one particular one off, for tonight and tomorrow).
Sally and I have swapped over again tonight, because she and Rachael are taking the rest of the brood to Flamingo Land, for the weekend. That meant I needed to set off about 4.00pm. I had the journey from hell…..
I blame ‘Sally Traffic’ on the Steve Wright show BBC radio2, myself. She said there was a massive hold up on the M62 and to avoid it. Well, I and all the other motorists in the north west did just that, and we all met up at the end of the East Lancs instead!! Then I got utterly and completely lost in Manchester. Every person I asked directions of didn’t come from M’ster, and nobody was able to tell me how to get to one of the largest hospitals in the North West! There are NO road signs to tell you and as it got dark and I was passing the MEN Arena for the 5th time I was beginning to wonder if I’d ever find it. Somehow I did and I landed at 7.30pm. Which just goes to show ladies….we don’t need sat navs do we?
I’m going to finish now that I have brought you up to date. Daddy and Grandma are coming to stay Frid and Sat night, so I’ll have to update you on Sunday or Monday. I’ll be heading back to Southport tomorrow night….if I can find it.
Night night and lots of love to everyone. Thank you, as usual, for all your loving thoughts and prayers.
Ella and Annette.xx
PS Ella was sooooooo delighted and excited to get your parcel Becca. To get something through the post was just brill and to find it was bubbles!!!!! We were all allowed a blow and Ella is using them as a physio exercise too!!xx
PPS Welcome back Sam and Grace.xx
PPPS What am I going to do with myself at home alone, for two whole days?x
First of all ‘white rabbits’ for today and then it’s another hello from our sauna. Phew!!! It’s 10.15pm on Thurs evening and it is STIFLING in here. Wish that man would get his finger off that knob.
Anyway, down to our news. Ella had a wonderful day yesterday. She was up and alert early, after what I thought was the hottest night I’ve spent for a long time. But it seemed to do Ella good, and after an early wash she was ready for the physio at 10.00am. Our little star got out at the far side of her bed and walked around to this side, to get onto the BGC. We helped and encouraged all the way of course, but we got there. She sat out all day, and was still out when Grandma and Grandad arrived later in the afternoon. By that time Ella was asleep, but she soon woke up and that started a super couple of hours. Ella wanted to go for a walk out to the shop, (with ALL of us) so off we went….Ella in the chariot, Grandma,Grandad, Mummy, Nanna and nurse Ali pushing the drips. The shop is just about big enough to fit us all in! Needless to say we came back with a bag full and a very happy Ella. Only one blip…..Ella’s lines are being naughty, so she is having to have bloods taken from a vein again, whilst they try to clear the lines. Results are ok though, and the ENT Dr is pleased with her ear. She needs it draining again later in the week.
I decided to take a trip home last night and leave Sally to it over night. My day at home has been very nice….lunch with Reg…a spot of shopping to buy Ella some new tops….and a 3hr journey back!!! More about that later.
Ella and Sally’s day has been more difficult, with Ella not feeling too good today. She told Sally quite firmly that she wanted a lie-in and she stayed asleep all morning! Ella has sat out today though, for a little while. She’s sleeping very peacefully now….stretched out and completely relaxed. Lovely! (Some of the medication she is on is very powerful stuff and ’Dr Denise’ decided at teatime to leave one particular one off, for tonight and tomorrow).
Sally and I have swapped over again tonight, because she and Rachael are taking the rest of the brood to Flamingo Land, for the weekend. That meant I needed to set off about 4.00pm. I had the journey from hell…..
I blame ‘Sally Traffic’ on the Steve Wright show BBC radio2, myself. She said there was a massive hold up on the M62 and to avoid it. Well, I and all the other motorists in the north west did just that, and we all met up at the end of the East Lancs instead!! Then I got utterly and completely lost in Manchester. Every person I asked directions of didn’t come from M’ster, and nobody was able to tell me how to get to one of the largest hospitals in the North West! There are NO road signs to tell you and as it got dark and I was passing the MEN Arena for the 5th time I was beginning to wonder if I’d ever find it. Somehow I did and I landed at 7.30pm. Which just goes to show ladies….we don’t need sat navs do we?
I’m going to finish now that I have brought you up to date. Daddy and Grandma are coming to stay Frid and Sat night, so I’ll have to update you on Sunday or Monday. I’ll be heading back to Southport tomorrow night….if I can find it.
Night night and lots of love to everyone. Thank you, as usual, for all your loving thoughts and prayers.
Ella and Annette.xx
PS Ella was sooooooo delighted and excited to get your parcel Becca. To get something through the post was just brill and to find it was bubbles!!!!! We were all allowed a blow and Ella is using them as a physio exercise too!!xx
PPS Welcome back Sam and Grace.xx
PPPS What am I going to do with myself at home alone, for two whole days?x
Wednesday 30 September 2009
Days +234+235 ( Mon 28th, Tues 29th Sept.)
How can it possibly be 2 whole days already, since I last blogged. We seem to be going on fast speed here, at the moment. Mind you, part of the problem is that we are not getting a proper connection. It is very slow and a bit hit and miss. I just hope that the dongle isn’t on it’s last ‘dong’! Any way I’ll give you an update on the last couple of days.
Ella has slept well during the last 2 nights, and that has meant that she’s been awake earlier and more ready to join in earlier….so everyone gets a better response. Yesterday saw the return of Dr Wynn, who arrived early morning, with his entourage in tow. He was very pleased that Ella is stable once again, and he hasn’t got any plans to change anything right now.
Ella, in the meantime, tries her very best to live life, with determination and courage, and to enjoy our days. She wanted to go for a little walk yesterday, but it didn’t work out that way….she fell asleep when there was a ‘staff slot’ and when she woke up there was no.one to take us out! Today was a different story….we went out about 5.00pm to the shop in the maternity hospital. It must stay open later, thank goodness, and we had a great 'shop'. Ella bought a book ( cookery….finger foods) and 2 nail files, and I bought 2 iced lollies( to cool us off ) and a pot noodle. What does that tell you?
We had visitors today as well. Firstly Rachael, Jack and Sid came to see us. Who is Sid you may ask? Well, Sid is Jack’s class mascot and he has been soooooooo excited waiting to bring him to see Ella. They had a little play together and then it was time to turn around and head back home. They came on the train( car trouble) and Sally went back with them, for a night at home with Sam.
Just as they left Andrea and June arrived, with treats of course. Ella was asleep, of course, in the BGC , but after a while and a shy beginning, she woke up and we enjoyed a lovely afternoon together. In fact, we did what all ladies do when they have a gooey choc cake to eat…..we had afternoon tea. By now Liz (teacher) had arrived and she joined us, so Ella had a speaking and listening lesson, as she served slices of cake. Very English, don’t you know!!!
I had already asked if Ella’s physio session could begin to include some walking again, so when Jan came along she is quite happy to do that, now Ella is getting out of bed again. She’s going to have a play with the bed too. She has always said that these super duper new beds can be made into a chair , and in fact get someone into a standing position…..so she is going to have a play tomorrow……..cameras at the ready!
I’m going to finish now and settle down for the night. It is like a sauna in here. Goodness only knows what has happened to the air system. Someone somewhere has touched a knob!!!!!!!!!!!!! Ella and I are melting.
So, night night from we two. We send lots of love and our usual thanks for your loving support and prayers.
Ella and Annette.xx
PS Thanks for your messages…..keep them coming.x
How can it possibly be 2 whole days already, since I last blogged. We seem to be going on fast speed here, at the moment. Mind you, part of the problem is that we are not getting a proper connection. It is very slow and a bit hit and miss. I just hope that the dongle isn’t on it’s last ‘dong’! Any way I’ll give you an update on the last couple of days.
Ella has slept well during the last 2 nights, and that has meant that she’s been awake earlier and more ready to join in earlier….so everyone gets a better response. Yesterday saw the return of Dr Wynn, who arrived early morning, with his entourage in tow. He was very pleased that Ella is stable once again, and he hasn’t got any plans to change anything right now.
Ella, in the meantime, tries her very best to live life, with determination and courage, and to enjoy our days. She wanted to go for a little walk yesterday, but it didn’t work out that way….she fell asleep when there was a ‘staff slot’ and when she woke up there was no.one to take us out! Today was a different story….we went out about 5.00pm to the shop in the maternity hospital. It must stay open later, thank goodness, and we had a great 'shop'. Ella bought a book ( cookery….finger foods) and 2 nail files, and I bought 2 iced lollies( to cool us off ) and a pot noodle. What does that tell you?
We had visitors today as well. Firstly Rachael, Jack and Sid came to see us. Who is Sid you may ask? Well, Sid is Jack’s class mascot and he has been soooooooo excited waiting to bring him to see Ella. They had a little play together and then it was time to turn around and head back home. They came on the train( car trouble) and Sally went back with them, for a night at home with Sam.
Just as they left Andrea and June arrived, with treats of course. Ella was asleep, of course, in the BGC , but after a while and a shy beginning, she woke up and we enjoyed a lovely afternoon together. In fact, we did what all ladies do when they have a gooey choc cake to eat…..we had afternoon tea. By now Liz (teacher) had arrived and she joined us, so Ella had a speaking and listening lesson, as she served slices of cake. Very English, don’t you know!!!
I had already asked if Ella’s physio session could begin to include some walking again, so when Jan came along she is quite happy to do that, now Ella is getting out of bed again. She’s going to have a play with the bed too. She has always said that these super duper new beds can be made into a chair , and in fact get someone into a standing position…..so she is going to have a play tomorrow……..cameras at the ready!
I’m going to finish now and settle down for the night. It is like a sauna in here. Goodness only knows what has happened to the air system. Someone somewhere has touched a knob!!!!!!!!!!!!! Ella and I are melting.
So, night night from we two. We send lots of love and our usual thanks for your loving support and prayers.
Ella and Annette.xx
PS Thanks for your messages…..keep them coming.x
Sunday 27 September 2009
Day 233 (Sun 27th Sept)
Hello again and welcome back. It’s just like yesterday really….I’m sat here, it’s about 5.00am, in the peaceful atmosphere of Ella’s room, listening to zzzzzzzz’s from Ella and Mummy and thinking about the news to tell you today.
Ella had a much better day yesterday….so that is the first thing to say. In fact she was sat out in the big green reclining chair ( I’ll tell you about that later) all day. We began with an early start, for us that is. Ella had her hair washed and we chose something pretty to wear and then she sat out and did some painting with Sally. ( it’s the 1st time she’s sat out for over a week.) It was great to see her engage in an activity like that.
Sally then disappeared to get us some lunch….on Sunday the canteen has a reasonable roast. WELL, when she got back there was steam coming out of her ears and she went on to explain what a performance she’d had trying to get satisfaction for the £16 pounds we were paying for 2 dinners and puddings etc. I hear that the whole queue started to rumble too….so maybe the ‘powers that be’ will have enough food for everyone next week….cooked on time….and not served in the smallest take away poly/dish in the world with everything piled on top of the other!!!!
After lunch we were looking forwards to X Factor….Ella was all ready….button pushed…. Comfy pillows etc. Then the beeps started and in came a flurry of angels, all helping each other out to get the pressures correct on Ella’s pumps. The only problem was, for us, that they were stood right in front of the screen. We could hear but not see! By the end of the programme we had given up and Ella had returned to bed to watch Grease….in between the beeps. Mind you she was tired, so a little snooze was in order.
We had a lovely surprise visit, from Uncle John, a little later. We had another trip to the canteen to get some tea, so that Ella could ‘help’ Uncle John to eat it….yes a lovely visit.
Did I tell you about the BGC ( big green chair?) Well, last week Jo, transplant co ord nurse, took pity on us when 3 of us stayed over, and she found us a reclining bedside chair, so that we can be closer to Ella during the night and even get some sleep. We are the only room to have one, so don’t tell anyone will you? I think eventually all the rooms will have one…but for the moment, in our case, it has made a great difference to Ella, because she can see us during the night and hold hands etc AND it’s comfortable!!!
I’m not sure what’s lined up for us today yet. I know Liz will be coming, and the physio and all the other usual, weekly activities we have.I think we may have some visitors too….Grandma and Grandad are back from holiday, so I guess they will be coming along very soon.
I’ll close now and get this posted off. It will be coming light soon and I want to have another cuppa before the ward starts to be on the move. I’ve got to run the gauntlet of crossing the bridge, to get back to the dorm.,in my spotty pj’s yet. It’s not too bad at the weekend, when the place is empty….but during the week everywhere is heaving from very early morning.
Night night from we three. We send you lots of love and our usual thanks for your prayers and loving support.
Ella, Sally and Annette.xxx
Hello again and welcome back. It’s just like yesterday really….I’m sat here, it’s about 5.00am, in the peaceful atmosphere of Ella’s room, listening to zzzzzzzz’s from Ella and Mummy and thinking about the news to tell you today.
Ella had a much better day yesterday….so that is the first thing to say. In fact she was sat out in the big green reclining chair ( I’ll tell you about that later) all day. We began with an early start, for us that is. Ella had her hair washed and we chose something pretty to wear and then she sat out and did some painting with Sally. ( it’s the 1st time she’s sat out for over a week.) It was great to see her engage in an activity like that.
Sally then disappeared to get us some lunch….on Sunday the canteen has a reasonable roast. WELL, when she got back there was steam coming out of her ears and she went on to explain what a performance she’d had trying to get satisfaction for the £16 pounds we were paying for 2 dinners and puddings etc. I hear that the whole queue started to rumble too….so maybe the ‘powers that be’ will have enough food for everyone next week….cooked on time….and not served in the smallest take away poly/dish in the world with everything piled on top of the other!!!!
After lunch we were looking forwards to X Factor….Ella was all ready….button pushed…. Comfy pillows etc. Then the beeps started and in came a flurry of angels, all helping each other out to get the pressures correct on Ella’s pumps. The only problem was, for us, that they were stood right in front of the screen. We could hear but not see! By the end of the programme we had given up and Ella had returned to bed to watch Grease….in between the beeps. Mind you she was tired, so a little snooze was in order.
We had a lovely surprise visit, from Uncle John, a little later. We had another trip to the canteen to get some tea, so that Ella could ‘help’ Uncle John to eat it….yes a lovely visit.
Did I tell you about the BGC ( big green chair?) Well, last week Jo, transplant co ord nurse, took pity on us when 3 of us stayed over, and she found us a reclining bedside chair, so that we can be closer to Ella during the night and even get some sleep. We are the only room to have one, so don’t tell anyone will you? I think eventually all the rooms will have one…but for the moment, in our case, it has made a great difference to Ella, because she can see us during the night and hold hands etc AND it’s comfortable!!!
I’m not sure what’s lined up for us today yet. I know Liz will be coming, and the physio and all the other usual, weekly activities we have.I think we may have some visitors too….Grandma and Grandad are back from holiday, so I guess they will be coming along very soon.
I’ll close now and get this posted off. It will be coming light soon and I want to have another cuppa before the ward starts to be on the move. I’ve got to run the gauntlet of crossing the bridge, to get back to the dorm.,in my spotty pj’s yet. It’s not too bad at the weekend, when the place is empty….but during the week everywhere is heaving from very early morning.
Night night from we three. We send you lots of love and our usual thanks for your prayers and loving support.
Ella, Sally and Annette.xxx
Saturday 26 September 2009
Day 232 (Sat 26th Sept)
Welcome back. Just a very short update I think. It is now 5.00am on Sunday morning and I am sat in the peace and quiet of Ella’s room, thinking. Watch out!
We had a good day yesterday….not very exciting really….but a good day. Lots of positives. Ella eventually ‘got up’ and had a very short wash, just in time for Daddy’s friend, Stuart, to arrive. He brought some letters for Ella, from his little boys….lovely.
We couldn’t go out, unfortunately, because of lack of staff, so they day did seem longer. We had a visit from the physio though, and she was very pleased with Ella….who managed to suck and blow on her inhaler ‘thingy’.
Daddy left for home…a few tears all round of course. He has had a longer stay this time and Ella has got used to being a ‘Daddy’s girl’ again. We coped though and waited for Mummy to arrive. We had a VERY long wait. Poor Sally had a nightmare experience coming back on the train and ended up getting a taxi back from Salford Crescent Station ( where ever that is ) because she couldn’t get on the train. Anyway, she was safe….that’s the main thing. In the meantime Ella and I ( well me really) watched ‘Strictly’ in peace. We are saving X Factor for Sunday afternoon….when we are all awake to enjoy it!!
I’m going to finish now except to tell you about a lovely pressy I was given yesterday. A really unusual pressy….half a cooked chicken. Nicola ( our next door neighbour and dorm sharing friend) had a visit from her inlaws and they brought the chicken with them. They had too much and shared it with me. It was divine!!!!!! I shared it with Sally, of course, although she was in danger of loosing it…..another few minutes in that taxi and it would have been gone.
Night night from us all here and thanks for your loving thoughts and prayers, as usual.
Ella, Sally and Annette.xxx
PS Any ideas about using left over chicken bones in the microwave?x
Welcome back. Just a very short update I think. It is now 5.00am on Sunday morning and I am sat in the peace and quiet of Ella’s room, thinking. Watch out!
We had a good day yesterday….not very exciting really….but a good day. Lots of positives. Ella eventually ‘got up’ and had a very short wash, just in time for Daddy’s friend, Stuart, to arrive. He brought some letters for Ella, from his little boys….lovely.
We couldn’t go out, unfortunately, because of lack of staff, so they day did seem longer. We had a visit from the physio though, and she was very pleased with Ella….who managed to suck and blow on her inhaler ‘thingy’.
Daddy left for home…a few tears all round of course. He has had a longer stay this time and Ella has got used to being a ‘Daddy’s girl’ again. We coped though and waited for Mummy to arrive. We had a VERY long wait. Poor Sally had a nightmare experience coming back on the train and ended up getting a taxi back from Salford Crescent Station ( where ever that is ) because she couldn’t get on the train. Anyway, she was safe….that’s the main thing. In the meantime Ella and I ( well me really) watched ‘Strictly’ in peace. We are saving X Factor for Sunday afternoon….when we are all awake to enjoy it!!
I’m going to finish now except to tell you about a lovely pressy I was given yesterday. A really unusual pressy….half a cooked chicken. Nicola ( our next door neighbour and dorm sharing friend) had a visit from her inlaws and they brought the chicken with them. They had too much and shared it with me. It was divine!!!!!! I shared it with Sally, of course, although she was in danger of loosing it…..another few minutes in that taxi and it would have been gone.
Night night from us all here and thanks for your loving thoughts and prayers, as usual.
Ella, Sally and Annette.xxx
PS Any ideas about using left over chicken bones in the microwave?x
Friday 25 September 2009
Day 231 ( Sept 25th Frid )
Well, here we are again, at last, at the end of a difficult week. I think I left you with Ella having a cold? Ummmmmm! What a cold. She developed pneumonia, an ear infection and other ‘ nasties’ …..all of which complicated her little life. We are here anyway, and I can tell you that she is much, much better and is beginning to sit up and take notice again.
We have had a very busy week for visitors too, as you could expect. Little brothers, Aunties, Uncles, cousins and friends have all been, to help cheer Ella up. Mummy, Daddy and I have been here all week too. At least 2 of us staying, sometimes 3….it was just easier than traipsing all the way home, only to turn around and come back the next day. Although having said that, we have each made a flying visit for the night, to ‘refresh’ suitcases and Sally went home last night, to see Sam, and is coming back tomorrow. We have decided, that for the time being, we need to have 2 of us here again. What would we do without Rachael and Reg to hold the fort at home?
There have been lots of bright moments this week, as well as serious ones. Naturally, a lot of them have been involved with food….you know us. Like the time Sally and I went along to McDonalds for breakfast, with a list as long as your arm, and then ‘sneaked’ it into the unit. Of course there isn’t much sneaking! Ella’s angels are in and out of the room all the time, and you can’t exactly disguise that McD’s smell, can you? Ella had a tiny taste of everything on the menu, so it was worth every moment. In fact, there have been quite a number of McD’s visits, now that we have found the way, through the hospital. This complete site is so huge, that you can walk along a central corridor, going through all the different departments, both children’s and adults, and end up half a mile later at McD’s on Oxford Rd!
What else have we done? Oh yes….had a ‘heated debate’ with the Head Teacher, of the school here, about the provision for Ella. It is difficult, we know that, working within the constraints of a tight budget, but there are ways of saying that without causing offence! Oh, and Ella made cakes yesterday, with Liz (teacher), who has turned out to be good friends with Ann ( cookery teacher from Pendlebury? ) and between them they have come up with some recipes to make in the microwave. So, that was a first for us all….microwaved fairy cakes. They were good, too.
I shared the dormitory with Jackson’s Mum last night. Both families are long stay, and we are next door neighbours on the unit, so it seems very sensible for us to share the dorm just between us. We watched the dancing, then it was a quick read and lights out. ZZZZZZZZZZZZZ.
It’s 6.30am right now, on Sat morning. I took over from Damian at 4.00am and since then Ella has been quite settled. The lockout time on the button has been put back to 30mins, for the time being, so she is more wakeful at times, waiting for it to be pushed!
Anyway, lots of love from us all here. Thanks, as ever, for your support and loving prayers.
Ella, Damian and Annette.xxx
PS My flowers are so beautiful Kate and Stephen. They really have cheered me up….not to mention the dorm!xx
PPS Hi to Martin and all our friends at AMC. Sorry I didn’t get back to you, Martin, I’ll definitely catch up with you this week. What’s it like to be back in harness?x
PPPS Big thanks to Auntie Andrea for taking ‘Bumbs’ for his hairdo. Did the lady stuff a cushion with his fleece? xx
Well, here we are again, at last, at the end of a difficult week. I think I left you with Ella having a cold? Ummmmmm! What a cold. She developed pneumonia, an ear infection and other ‘ nasties’ …..all of which complicated her little life. We are here anyway, and I can tell you that she is much, much better and is beginning to sit up and take notice again.
We have had a very busy week for visitors too, as you could expect. Little brothers, Aunties, Uncles, cousins and friends have all been, to help cheer Ella up. Mummy, Daddy and I have been here all week too. At least 2 of us staying, sometimes 3….it was just easier than traipsing all the way home, only to turn around and come back the next day. Although having said that, we have each made a flying visit for the night, to ‘refresh’ suitcases and Sally went home last night, to see Sam, and is coming back tomorrow. We have decided, that for the time being, we need to have 2 of us here again. What would we do without Rachael and Reg to hold the fort at home?
There have been lots of bright moments this week, as well as serious ones. Naturally, a lot of them have been involved with food….you know us. Like the time Sally and I went along to McDonalds for breakfast, with a list as long as your arm, and then ‘sneaked’ it into the unit. Of course there isn’t much sneaking! Ella’s angels are in and out of the room all the time, and you can’t exactly disguise that McD’s smell, can you? Ella had a tiny taste of everything on the menu, so it was worth every moment. In fact, there have been quite a number of McD’s visits, now that we have found the way, through the hospital. This complete site is so huge, that you can walk along a central corridor, going through all the different departments, both children’s and adults, and end up half a mile later at McD’s on Oxford Rd!
What else have we done? Oh yes….had a ‘heated debate’ with the Head Teacher, of the school here, about the provision for Ella. It is difficult, we know that, working within the constraints of a tight budget, but there are ways of saying that without causing offence! Oh, and Ella made cakes yesterday, with Liz (teacher), who has turned out to be good friends with Ann ( cookery teacher from Pendlebury? ) and between them they have come up with some recipes to make in the microwave. So, that was a first for us all….microwaved fairy cakes. They were good, too.
I shared the dormitory with Jackson’s Mum last night. Both families are long stay, and we are next door neighbours on the unit, so it seems very sensible for us to share the dorm just between us. We watched the dancing, then it was a quick read and lights out. ZZZZZZZZZZZZZ.
It’s 6.30am right now, on Sat morning. I took over from Damian at 4.00am and since then Ella has been quite settled. The lockout time on the button has been put back to 30mins, for the time being, so she is more wakeful at times, waiting for it to be pushed!
Anyway, lots of love from us all here. Thanks, as ever, for your support and loving prayers.
Ella, Damian and Annette.xxx
PS My flowers are so beautiful Kate and Stephen. They really have cheered me up….not to mention the dorm!xx
PPS Hi to Martin and all our friends at AMC. Sorry I didn’t get back to you, Martin, I’ll definitely catch up with you this week. What’s it like to be back in harness?x
PPPS Big thanks to Auntie Andrea for taking ‘Bumbs’ for his hairdo. Did the lady stuff a cushion with his fleece? xx
Friday 18 September 2009
Days 223,224 (Thurs and Frid 17th,18th Sept)
Hello again from us here. I’ve decided to do a double whammy tonight and include our news from both days. Actually I was really tired last night and fell asleep quite early. It was perhaps a good job, because after that we had a very wakeful night indeed, with Ella having the snuffles and earache.
Yesterday though we had a trip out to find ‘the other’ coffee shop. Andrea took us and Amy ( another little girl on the unit). Amy has been that way before with her Dad, so she was able to show us the route. I think that was just about the most exciting thing for yesterday. We were too late for physio because Ella was very sleepy, and when her teacher came Ella had a very short lesson……..more zzzzzzzzzzzzzzzzzzzzzzz’s.
Today has followed much the same pattern, with Ella tired and full of cold. She has kept me very busy, in between sleeps, but I did get a short break when Linda arrived to be with us for an hour or so. I took the opportunity to go down to the coffee shop. Ella trusts Linda now, so it is fine to leave her for a short while. When I got back we washed her and got her up, and who should walk in…..Reg. He brought Ella some more Sylvanian family, so that made a welcome distraction.
It wasn’t long before Liz ( teacher) arrived and Ella joined in her literacy lesson. She didn’t really want to ( Ella that is) but we got there in the end. The same thing happened today as well. We just have to work around all the reasons Ella gives, as to why she can’t join in, and give masses of praise when she does.
We had a visit from the ENT Dr today, who came to look at Ella’s ear. When he came back later to check on her he had a bar of chocolate in his pocket for her. She was asleep and missed the moment, but I thought how kind that was to remember her?
At the moment I’m watching ‘Strictly’ and writing to you….Ella is asleep, so it seems a good time to take a few minutes out.
Night night and lots of love to everyone. We send all our usual thanks for your support and loving prayers.
Ella and Annette.xx
Hello again from us here. I’ve decided to do a double whammy tonight and include our news from both days. Actually I was really tired last night and fell asleep quite early. It was perhaps a good job, because after that we had a very wakeful night indeed, with Ella having the snuffles and earache.
Yesterday though we had a trip out to find ‘the other’ coffee shop. Andrea took us and Amy ( another little girl on the unit). Amy has been that way before with her Dad, so she was able to show us the route. I think that was just about the most exciting thing for yesterday. We were too late for physio because Ella was very sleepy, and when her teacher came Ella had a very short lesson……..more zzzzzzzzzzzzzzzzzzzzzzz’s.
Today has followed much the same pattern, with Ella tired and full of cold. She has kept me very busy, in between sleeps, but I did get a short break when Linda arrived to be with us for an hour or so. I took the opportunity to go down to the coffee shop. Ella trusts Linda now, so it is fine to leave her for a short while. When I got back we washed her and got her up, and who should walk in…..Reg. He brought Ella some more Sylvanian family, so that made a welcome distraction.
It wasn’t long before Liz ( teacher) arrived and Ella joined in her literacy lesson. She didn’t really want to ( Ella that is) but we got there in the end. The same thing happened today as well. We just have to work around all the reasons Ella gives, as to why she can’t join in, and give masses of praise when she does.
We had a visit from the ENT Dr today, who came to look at Ella’s ear. When he came back later to check on her he had a bar of chocolate in his pocket for her. She was asleep and missed the moment, but I thought how kind that was to remember her?
At the moment I’m watching ‘Strictly’ and writing to you….Ella is asleep, so it seems a good time to take a few minutes out.
Night night and lots of love to everyone. We send all our usual thanks for your support and loving prayers.
Ella and Annette.xx
Thursday 17 September 2009
Day +222 ( Weds Sept 16th)
Hi. Here we are again on Weds evening. Sally and I have had our change over day and she is safely home in Southport. I know from what she has told me that Ella has had good days since I left last Saturday. I also know that she has made the most delicious cheese cake, with Sally and the OT,s. It is very professional looking and tastes fab too.
The last few days in Southport have been very busy…..I’ve been staying at Rachael’s to help her out. It’s hectic all the time with four little ones. It’s hectic even when they’re all out at school or nursery! But today really took the biscuit. I hardly know where to begin, except to say that a fine toothed comb was involved and all of us had to be done!! It was a relief to be back in Manchester, for a little peace and quiet. ( in 30yrs of being a Mum, and even longer of being a teacher, I have never been so flabbergahasted! To add insult to injury the Hotpoint man arrived in the middle of the mayhem. Oh misery…..).
Anyway, back to Ella. We have spent a few happy hours watching TV….The Hairy Bikers and Masterchef and now we are both tired out. Ella has been asleep for quite a while actually and I’m just about ready to lie down. I’m full of cheesecake and tea, so I think I should stop right now before another slice slides down.
I know that Ella has had a really quiet day today, she hasn’t felt up to joining in. I think an increase in certain medications has knocked her out. So fingers crossed that she will be back on form tomorrow, and ready to enjoy everything that’s planned for her.
Night night from both of us here. We send you all lots of love and thanks, as usual, for your loving support and prayers.
Ella and Annette.xx
PS Thankyou so much to the Waites for Ella’s butterfly. She is now flying high, from the hoist on the ceiling.x
PPS Hello to everyone at OLOL. Hope the beginning of term is going well and that all Ella’s friends have settled into their new Classes.x
Hi. Here we are again on Weds evening. Sally and I have had our change over day and she is safely home in Southport. I know from what she has told me that Ella has had good days since I left last Saturday. I also know that she has made the most delicious cheese cake, with Sally and the OT,s. It is very professional looking and tastes fab too.
The last few days in Southport have been very busy…..I’ve been staying at Rachael’s to help her out. It’s hectic all the time with four little ones. It’s hectic even when they’re all out at school or nursery! But today really took the biscuit. I hardly know where to begin, except to say that a fine toothed comb was involved and all of us had to be done!! It was a relief to be back in Manchester, for a little peace and quiet. ( in 30yrs of being a Mum, and even longer of being a teacher, I have never been so flabbergahasted! To add insult to injury the Hotpoint man arrived in the middle of the mayhem. Oh misery…..).
Anyway, back to Ella. We have spent a few happy hours watching TV….The Hairy Bikers and Masterchef and now we are both tired out. Ella has been asleep for quite a while actually and I’m just about ready to lie down. I’m full of cheesecake and tea, so I think I should stop right now before another slice slides down.
I know that Ella has had a really quiet day today, she hasn’t felt up to joining in. I think an increase in certain medications has knocked her out. So fingers crossed that she will be back on form tomorrow, and ready to enjoy everything that’s planned for her.
Night night from both of us here. We send you all lots of love and thanks, as usual, for your loving support and prayers.
Ella and Annette.xx
PS Thankyou so much to the Waites for Ella’s butterfly. She is now flying high, from the hoist on the ceiling.x
PPS Hello to everyone at OLOL. Hope the beginning of term is going well and that all Ella’s friends have settled into their new Classes.x
Friday 11 September 2009
Day +217 (Frid 11th Sept)
Welcome one and all, although I think you must all still be on holiday. Where are you? We are missing your news!
We had another very good night, with plenty of sleep in between busy times. Again we had quite an early start today….this time with a continental breakfast, so there!! Ella wanted me to go down to the canteen ( note the change of title ) to get something for us to eat, and then smuggle it back in. Naturally I obeyed and came back with an egg butty ( very French ) a croissant, a bottle of milk and the newspaper. By the time I had been to the pantry to get a plate Ella had opened the milk and was sat in bed with a very ‘pink’ face and white moustache. It was very funny and we both had to laugh.
We were up and ready for Emily, but just as she walked in we had an unexpected visit from Uncle Gav, Dianne and Ethan. They had been to Lego Land and brought Ella a pink set back. Emily bowed out gracefully ( she came back later ) and a happy hour was spent making lego houses and figures.
Today Ella was really disappointed not to get off the unit and go out for our daily walk. There has been a real shortage of staff both on the unit and in physio, so we had to do with just a short visit here from Ali (physio). Mind you Ella was able to show off her new skill! Walking without holding hands……Nurse Ali and I couldn’t believe our eyes when Ella took off from the bathroom straight to her chariot in the bedroom, this morning. I was left behind trying to keep up, pushing the lines. A lovely moment.
We did have a little push out to see Jackson, he lives in the room next door. Ella likes to keep a check on him and they share sweets or cakes. Then we went along to Amy’s hideout down the corridor to take her a DVD. Then at last Ella was tired and she settled down in bed for a sleep about 7.30pm and has been quite settled since. In fact it is 10.30pm now and I’m just about to watch ‘Rossy’ …..that’s if the signal stays strong enough.
So, night night from us and we send our love and usual thanks for all your support and prayers.
Ella and Annettexx
PS Hope all you Cold Play fans out there enjoy the concert tomorrow.x
Welcome one and all, although I think you must all still be on holiday. Where are you? We are missing your news!
We had another very good night, with plenty of sleep in between busy times. Again we had quite an early start today….this time with a continental breakfast, so there!! Ella wanted me to go down to the canteen ( note the change of title ) to get something for us to eat, and then smuggle it back in. Naturally I obeyed and came back with an egg butty ( very French ) a croissant, a bottle of milk and the newspaper. By the time I had been to the pantry to get a plate Ella had opened the milk and was sat in bed with a very ‘pink’ face and white moustache. It was very funny and we both had to laugh.
We were up and ready for Emily, but just as she walked in we had an unexpected visit from Uncle Gav, Dianne and Ethan. They had been to Lego Land and brought Ella a pink set back. Emily bowed out gracefully ( she came back later ) and a happy hour was spent making lego houses and figures.
Today Ella was really disappointed not to get off the unit and go out for our daily walk. There has been a real shortage of staff both on the unit and in physio, so we had to do with just a short visit here from Ali (physio). Mind you Ella was able to show off her new skill! Walking without holding hands……Nurse Ali and I couldn’t believe our eyes when Ella took off from the bathroom straight to her chariot in the bedroom, this morning. I was left behind trying to keep up, pushing the lines. A lovely moment.
We did have a little push out to see Jackson, he lives in the room next door. Ella likes to keep a check on him and they share sweets or cakes. Then we went along to Amy’s hideout down the corridor to take her a DVD. Then at last Ella was tired and she settled down in bed for a sleep about 7.30pm and has been quite settled since. In fact it is 10.30pm now and I’m just about to watch ‘Rossy’ …..that’s if the signal stays strong enough.
So, night night from us and we send our love and usual thanks for all your support and prayers.
Ella and Annettexx
PS Hope all you Cold Play fans out there enjoy the concert tomorrow.x
Thursday 10 September 2009
Day +216 (Thurs 10th Sept)
Hi everyone. Hope you have all had a good day, as we have here! The sun has shone and we have filled our day with activities!
Ella had a good night with Kirsty looking after her every need, which meant that I slept too. What a difference it makes when you are well rested. Having said that, we had to peel Ella off her bed to get her into the bath this morning. A bit of bribery was needed, but she was all washed and ready by the time Emily came at 11.00am. In fact, Ella sat out in the chariot for her lesson today, which made it much easier for her to write when she needed to. She is really growing in confidence as each day goes by and I’m sure it won’t be long before she is reading independently again.
Reg arrived just as they finished and he brought with him all the makings of wraps and salad…..which Ella helped to make. Before we knew it Liz arrived ( teacher) to do some maths. Ummm….that didn’t go down too well. Ella was flagging a little, but we managed. Then it was straight down to physio for a long walk and a game of ‘hanging monkeys’. I think by the end of the 2nd game Ella wanted to throw the monkeys through the nearest window…..she has to stand every time it’s her turn and she’s not too keen on that. But once again we got to the end and then headed to the shop for some treats.
Our last activity was a real act of defiance. We made window decorations with Lorraine( play specialist) AND stuck them on the window!! I heard from Nicola, who lives next door to us on the unit, that she has been asked to de-clutter their room, so we were wandering if we would be next…..it will need to be a brave person who asks us all to do that!
Right now Ella is asleep and I am watching TV. Hoorah! Reg worked his magic on the ariel and we are back in business. We heard more TV news today….we may be getting our TVs in a few weeks time. I’m not going to hold my breath, but you never know….Santa may have them hidden somewhere?
I haven’t got any photos for you today but I hope you liked yesterdays? I’ll see what I can do tomorrow.
One last piece of news….going back to bathtime today. Ella had 2 bath bombs in there with her. A yellow one and a pink one, which managed to weld themselves to the bottom of the bath. I have been praying all day that the mess would go un noticed, until I could get time to clean it off. Anyway, it’s off….. we can all sleep with a clear conscience now.
Night night from we two.
Lots of love and thanks for all your prayers and loving support.
Ella and Annettexx
Hi everyone. Hope you have all had a good day, as we have here! The sun has shone and we have filled our day with activities!
Ella had a good night with Kirsty looking after her every need, which meant that I slept too. What a difference it makes when you are well rested. Having said that, we had to peel Ella off her bed to get her into the bath this morning. A bit of bribery was needed, but she was all washed and ready by the time Emily came at 11.00am. In fact, Ella sat out in the chariot for her lesson today, which made it much easier for her to write when she needed to. She is really growing in confidence as each day goes by and I’m sure it won’t be long before she is reading independently again.
Reg arrived just as they finished and he brought with him all the makings of wraps and salad…..which Ella helped to make. Before we knew it Liz arrived ( teacher) to do some maths. Ummm….that didn’t go down too well. Ella was flagging a little, but we managed. Then it was straight down to physio for a long walk and a game of ‘hanging monkeys’. I think by the end of the 2nd game Ella wanted to throw the monkeys through the nearest window…..she has to stand every time it’s her turn and she’s not too keen on that. But once again we got to the end and then headed to the shop for some treats.
Our last activity was a real act of defiance. We made window decorations with Lorraine( play specialist) AND stuck them on the window!! I heard from Nicola, who lives next door to us on the unit, that she has been asked to de-clutter their room, so we were wandering if we would be next…..it will need to be a brave person who asks us all to do that!
Right now Ella is asleep and I am watching TV. Hoorah! Reg worked his magic on the ariel and we are back in business. We heard more TV news today….we may be getting our TVs in a few weeks time. I’m not going to hold my breath, but you never know….Santa may have them hidden somewhere?
I haven’t got any photos for you today but I hope you liked yesterdays? I’ll see what I can do tomorrow.
One last piece of news….going back to bathtime today. Ella had 2 bath bombs in there with her. A yellow one and a pink one, which managed to weld themselves to the bottom of the bath. I have been praying all day that the mess would go un noticed, until I could get time to clean it off. Anyway, it’s off….. we can all sleep with a clear conscience now.
Night night from we two.
Lots of love and thanks for all your prayers and loving support.
Ella and Annettexx
Wednesday 9 September 2009
Day + 215 ( Weds 9th Sept )
Hi. Sorry that it has been so long since we last spoke to you but I have been back in Southport for a few days. Anyway I’m back now so we can catch up on news for the next few days. I thought I’d give you an update on the new Uggs…..they arrived here on Friday. Ella is delighted with them and so is Dr Wynn. He took a photo of them to show his daughter!
I know that Ella has had a few comfortable days. Getting used to the increased ‘lock out’ time on her pain control has been difficult at times, but she is getting there slowly. Her body clock is programmed to having certain things at certain times, and undoing that is very challenging for her. She is being an absolute star though, as usual, although it doesn’t always feel that way in the early hours of the morning.
There have been great discussions about how to deal with the GVH. Dr Wynn and his team have decided that they are going to use thalidomide to combat the symptoms, starting today. There has been a lot of positive news about using this drug in other transplant centres, including Great Ormond St.
When I arrived today Rachael and Sophie had already settled in and Sally had left for a well earned few days rest. Ella was delighted to see her little cousin of course. She has begun to chatter now, in English rather than ‘Double Dutch’ which Ella hasn’t heard before. Ella was looking forward to feeding her as well, but Sophie had other ideas about that. She wanted to sit on the bed and play at being a ‘big girl’ rather than be the baby. Still, she made us all laugh when she managed to balance Ella’s new bath toy on her head and smile for the camera at the same time !!
When they had left for home it was time for us to go down to physio, so Andrea took us along. Ella worked really hard again, with her standing and walking. In fact, as a big treat she was allowed to take a look at the new hydro therapy pool, which was being tried out today by some of the staff. I don’t think they were too pleased at being watched, but we really enjoyed it…..it was a real change for Ella! We had a short trip out later on as well, thanks to Andrea. It makes such a difference to Ella’s day when she can get off the unit and have look around the place. We walked down to the entrance to sniff the fresh air….although we can’t go outside……then we made our way back via the restaurant.
( more money!!!!!!!!!!!) We can’t go in there together either, but at least we can sniff that too.
Right now the night staff have taken over and Andrea and her team have gone home. They all work so hard to make the children comfortable and loved. Ella loves them all to bits and so do we!!!
I’m writing while Ella is asleep. She crashed about 7.30pm tonight, leaving me to watch Billy Elliot on my own. Actually that probably wasn’t a bad thing, as the language is rather blue. (I love the film though, don’t you? Especially when he makes that giant leap at the end… it always makes me cry.)
I’m going to finish off for tonight and find my PJ’s. For some reason I’m not tired yet, so I may even watch another film. I can’t watch TV …….there isn’t a signal. Still, Reg is coming tomorrow so maybe he can sort it out for us.
Night night then to everyone and lots of love. We send you our thanks for all your prayers and loving support.
Ella and Annette xx
PS Hi Sue, thanks for your message. Glad to hear you had a super holiday. Missing you too, but I know that 6N are in the very best hands.x
Hi. Sorry that it has been so long since we last spoke to you but I have been back in Southport for a few days. Anyway I’m back now so we can catch up on news for the next few days. I thought I’d give you an update on the new Uggs…..they arrived here on Friday. Ella is delighted with them and so is Dr Wynn. He took a photo of them to show his daughter!
I know that Ella has had a few comfortable days. Getting used to the increased ‘lock out’ time on her pain control has been difficult at times, but she is getting there slowly. Her body clock is programmed to having certain things at certain times, and undoing that is very challenging for her. She is being an absolute star though, as usual, although it doesn’t always feel that way in the early hours of the morning.
There have been great discussions about how to deal with the GVH. Dr Wynn and his team have decided that they are going to use thalidomide to combat the symptoms, starting today. There has been a lot of positive news about using this drug in other transplant centres, including Great Ormond St.
When I arrived today Rachael and Sophie had already settled in and Sally had left for a well earned few days rest. Ella was delighted to see her little cousin of course. She has begun to chatter now, in English rather than ‘Double Dutch’ which Ella hasn’t heard before. Ella was looking forward to feeding her as well, but Sophie had other ideas about that. She wanted to sit on the bed and play at being a ‘big girl’ rather than be the baby. Still, she made us all laugh when she managed to balance Ella’s new bath toy on her head and smile for the camera at the same time !!
When they had left for home it was time for us to go down to physio, so Andrea took us along. Ella worked really hard again, with her standing and walking. In fact, as a big treat she was allowed to take a look at the new hydro therapy pool, which was being tried out today by some of the staff. I don’t think they were too pleased at being watched, but we really enjoyed it…..it was a real change for Ella! We had a short trip out later on as well, thanks to Andrea. It makes such a difference to Ella’s day when she can get off the unit and have look around the place. We walked down to the entrance to sniff the fresh air….although we can’t go outside……then we made our way back via the restaurant.
( more money!!!!!!!!!!!) We can’t go in there together either, but at least we can sniff that too.
Right now the night staff have taken over and Andrea and her team have gone home. They all work so hard to make the children comfortable and loved. Ella loves them all to bits and so do we!!!
I’m writing while Ella is asleep. She crashed about 7.30pm tonight, leaving me to watch Billy Elliot on my own. Actually that probably wasn’t a bad thing, as the language is rather blue. (I love the film though, don’t you? Especially when he makes that giant leap at the end… it always makes me cry.)
I’m going to finish off for tonight and find my PJ’s. For some reason I’m not tired yet, so I may even watch another film. I can’t watch TV …….there isn’t a signal. Still, Reg is coming tomorrow so maybe he can sort it out for us.
Night night then to everyone and lots of love. We send you our thanks for all your prayers and loving support.
Ella and Annette xx
PS Hi Sue, thanks for your message. Glad to hear you had a super holiday. Missing you too, but I know that 6N are in the very best hands.x
Thursday 3 September 2009
Day +209 ( Thurs 3rd Sept)
Here we are again….in dark, cold and rainy Manchester. How the nights are drawing in? It really is like the North Pole here. The rain batters down on the atrium roofing and we can hear it, even in the unit.
Just a short letter tonight about our very good day. Ella has worked really hard at her school work, both with Emily this morning and with her new teacher Liz, this afternoon. Liz came to do a short assessment of where Ella is up to, and when she comes back tomorrow afternoon she will have some ‘proper’ work to do. Emily concentrated on Ella doing some reading today and she was really pleased with Ella’s response.
We went down to physio this afternoon too, after a couple of false starts. Today, Ella wore her UGG boots ( last years’ model) to help her to stand more steadily, and they did the trick. She was able to stand at the table for a good 5 mins to play a game with me, which was great to see. We topped that off with a quick visit to the shop again and then back for a snooze again.
I have got something to look forward to tomorrow……Ella is going to wash my hair. I sort of promised her that she could do it while she was having hers done today. We ran out of time today, so I think tomorrow will be ‘d-day’. I’ve been trying to work out the best way to go about it, how to fit us all in the bathroom, do the job and not end up with us all soaked. Still, it will be fun what ever happens.
Ella is sleeping peacefully, the night staff have taken over and I am watching telly and writing. It’s great to be sat here actually WATCHING a real programme!!!! I know that we should be able to entertain ourselves, like they did in ‘the old days’ before TV, but it’s such a relief to have a ‘grown up’ distraction whilst Ella sleeps.
I’m going to finish now and send you lots of love from us here, and all our thanks for your prayers and support. We haven’t heard much news from you lately. Don’t forget us will you?
Ella and Annette.xx
Here we are again….in dark, cold and rainy Manchester. How the nights are drawing in? It really is like the North Pole here. The rain batters down on the atrium roofing and we can hear it, even in the unit.
Just a short letter tonight about our very good day. Ella has worked really hard at her school work, both with Emily this morning and with her new teacher Liz, this afternoon. Liz came to do a short assessment of where Ella is up to, and when she comes back tomorrow afternoon she will have some ‘proper’ work to do. Emily concentrated on Ella doing some reading today and she was really pleased with Ella’s response.
We went down to physio this afternoon too, after a couple of false starts. Today, Ella wore her UGG boots ( last years’ model) to help her to stand more steadily, and they did the trick. She was able to stand at the table for a good 5 mins to play a game with me, which was great to see. We topped that off with a quick visit to the shop again and then back for a snooze again.
I have got something to look forward to tomorrow……Ella is going to wash my hair. I sort of promised her that she could do it while she was having hers done today. We ran out of time today, so I think tomorrow will be ‘d-day’. I’ve been trying to work out the best way to go about it, how to fit us all in the bathroom, do the job and not end up with us all soaked. Still, it will be fun what ever happens.
Ella is sleeping peacefully, the night staff have taken over and I am watching telly and writing. It’s great to be sat here actually WATCHING a real programme!!!! I know that we should be able to entertain ourselves, like they did in ‘the old days’ before TV, but it’s such a relief to have a ‘grown up’ distraction whilst Ella sleeps.
I’m going to finish now and send you lots of love from us here, and all our thanks for your prayers and support. We haven’t heard much news from you lately. Don’t forget us will you?
Ella and Annette.xx
Wednesday 2 September 2009
Day +208 (Weds 2nd Sept)
Hi and welcome back to us here. It is around 9.30pm and guess what? I’m watching telly!!! Admittedly the picture is breaking up, but nevertheless it beats a magnolia wall any time. Actually the picture has been good all day, but tonight the monsoon season has begun here and I think that has a lot to do with it. Anyway, on to our news.
We have had a very good day! We had a busy night, with what seemed like no sleep at all, but we survived and were still smiling at the end of it. In fact Ella was in the bath at 10.30am, with Emily here as well ( teaching assistant) ready to do some work, when Ella was back in bed. She did some writing and listened to a couple of stories…..slow beginnings, but after many weeks of not feeling up to joining in she did very well. I made myself scarce and let Emily take over for half an hour. I know Ella would have looked for sympathy if I had stayed. Tomorrow….more writing and a little reading.
Auntie Margaret and Reggie arrived at lunch time, just in time for Ella to direct operations about the wraps she was making for their lunch. ( I’d popped to Tesco while Emily was in). She really is in her element again. As soon as that pinny goes on she steps up a gear!
Ella couldn’t wait to give Reg his birthday presents, even though they are a day early, and of course he made a big fuss about opening them. As you can see from the photos….smiles all round.
We all went down to physio after lunch. Ella wasn’t too impressed with the exercise, but her loyal and devoted fan club cheered her on every time she headed the ball on the Wii. We made a quick escape to the shop for a few treats and then back to have a well earned snooze.
Dr Wynn came just as Ella’s tea arrived and just as she was sat on the potty. ( we are excellent multi taskers aren’t we girls) and said he is pleased with her yet again. They are going to increase the ‘lock out’ time on her PCA to an hour…he is very pleased with how the pain relief is working at the moment. Ella chatted to him about all kinds of things, including food , and then they got onto his children and then discussed her new UGG boots…..which Mummy has bought today. He even checked out the photo of them on my phone! He offered to take Ella down to physio tomorrow for a game on the Wii. He’s bitten off a lot if they have a bowling match.
I’m going to finish now for the night and get this posted off. My early night last night didn’t happen and if I carry on much longer it won’t tonight either will it?
So, night night to everyone, lots of love and our usual thanks for all your support and loving prayers.
Ella and Annettexx
PS We hope you all have a really good day as you get back to school. Special love to all my friends at St John’s, as you begin a new year. It seems very strange not to be there too.x
Hi and welcome back to us here. It is around 9.30pm and guess what? I’m watching telly!!! Admittedly the picture is breaking up, but nevertheless it beats a magnolia wall any time. Actually the picture has been good all day, but tonight the monsoon season has begun here and I think that has a lot to do with it. Anyway, on to our news.
We have had a very good day! We had a busy night, with what seemed like no sleep at all, but we survived and were still smiling at the end of it. In fact Ella was in the bath at 10.30am, with Emily here as well ( teaching assistant) ready to do some work, when Ella was back in bed. She did some writing and listened to a couple of stories…..slow beginnings, but after many weeks of not feeling up to joining in she did very well. I made myself scarce and let Emily take over for half an hour. I know Ella would have looked for sympathy if I had stayed. Tomorrow….more writing and a little reading.
Auntie Margaret and Reggie arrived at lunch time, just in time for Ella to direct operations about the wraps she was making for their lunch. ( I’d popped to Tesco while Emily was in). She really is in her element again. As soon as that pinny goes on she steps up a gear!
Ella couldn’t wait to give Reg his birthday presents, even though they are a day early, and of course he made a big fuss about opening them. As you can see from the photos….smiles all round.
We all went down to physio after lunch. Ella wasn’t too impressed with the exercise, but her loyal and devoted fan club cheered her on every time she headed the ball on the Wii. We made a quick escape to the shop for a few treats and then back to have a well earned snooze.
Dr Wynn came just as Ella’s tea arrived and just as she was sat on the potty. ( we are excellent multi taskers aren’t we girls) and said he is pleased with her yet again. They are going to increase the ‘lock out’ time on her PCA to an hour…he is very pleased with how the pain relief is working at the moment. Ella chatted to him about all kinds of things, including food , and then they got onto his children and then discussed her new UGG boots…..which Mummy has bought today. He even checked out the photo of them on my phone! He offered to take Ella down to physio tomorrow for a game on the Wii. He’s bitten off a lot if they have a bowling match.
I’m going to finish now for the night and get this posted off. My early night last night didn’t happen and if I carry on much longer it won’t tonight either will it?
So, night night to everyone, lots of love and our usual thanks for all your support and loving prayers.
Ella and Annettexx
PS We hope you all have a really good day as you get back to school. Special love to all my friends at St John’s, as you begin a new year. It seems very strange not to be there too.x
Tuesday 1 September 2009
Day 207 ( Sept 1st Tues )
Hi, we are here again, ready to tell our latest news from Manchester. Hope you all had a really fab long weekend and that work wasn’t too much of a shock!!
As you know Daddy has been here for a couple of nights, followed by Sally on Sunday and Monday and now I’ve arrived back until the end of the week. Honestly, I just don’t know how the weeks fly by without us even noticing sometimes.
I know that Ella has had a comfortable weekend. She has been quietly watching films (on the new TV screen) and Daddy brought the Wii back, but unfortunately he couldn’t get it tuned in….so there was no sound or colour on the games. Mummy tried too, with no luck, so I don’t think I’ll be any better, do you? In herself Ella has been a lot more cheerful of late, but she still has the rash from last week, so she has restarted one of the anti-rejection drugs to see if that will sort the problem out.
I’ve put some snaps on for you to enjoy. The first 2 are from last week actually, when Ella went along to work with the OT in their d’part. She really enjoyed it and was looking forward sooooo much to going again today, to make cheesecake. Of course there was a change of plan, things are never that straight forward are they, and Joanne ended up coming in here to make cornflake cakes instead. Ella was disappointed to begin with, but Sam was here too and that eased the situation a lot. They had a super time together….Ella being the real big sister. I would love to put captions to the photos, but I guess you can add your own, the looks on their faces say it all don’t they?
I’m hoping the teachers start again very soon. Ella is ready for some really positive distractions now. There are only so many times you can make cakes!!
Sally and Sam left just before teatime and now it is just after 9.00pm. Ella is fast asleep and I’m going to go along shortly to buy a cuppa and then settle down for some sleep…..I hope. So we will speak tomorrow and let you know how we coped with all Weds adventures!!
Nite nite and lots of love to everyone. Thankyou for your loving prayers and support, as always.
Ella and Annette.xx
PS A special hello to Libby, Hannah and Grace. It was great to see you on Sunday. Did you get your new shoes?x
PPS Reg and Auntie Margaret are coming tomorrow with an ariel for the TV ( thanks Reggie) so we are hoping Reg can work his magic and get it tuned in.
Hi, we are here again, ready to tell our latest news from Manchester. Hope you all had a really fab long weekend and that work wasn’t too much of a shock!!
As you know Daddy has been here for a couple of nights, followed by Sally on Sunday and Monday and now I’ve arrived back until the end of the week. Honestly, I just don’t know how the weeks fly by without us even noticing sometimes.
I know that Ella has had a comfortable weekend. She has been quietly watching films (on the new TV screen) and Daddy brought the Wii back, but unfortunately he couldn’t get it tuned in….so there was no sound or colour on the games. Mummy tried too, with no luck, so I don’t think I’ll be any better, do you? In herself Ella has been a lot more cheerful of late, but she still has the rash from last week, so she has restarted one of the anti-rejection drugs to see if that will sort the problem out.
I’ve put some snaps on for you to enjoy. The first 2 are from last week actually, when Ella went along to work with the OT in their d’part. She really enjoyed it and was looking forward sooooo much to going again today, to make cheesecake. Of course there was a change of plan, things are never that straight forward are they, and Joanne ended up coming in here to make cornflake cakes instead. Ella was disappointed to begin with, but Sam was here too and that eased the situation a lot. They had a super time together….Ella being the real big sister. I would love to put captions to the photos, but I guess you can add your own, the looks on their faces say it all don’t they?
I’m hoping the teachers start again very soon. Ella is ready for some really positive distractions now. There are only so many times you can make cakes!!
Sally and Sam left just before teatime and now it is just after 9.00pm. Ella is fast asleep and I’m going to go along shortly to buy a cuppa and then settle down for some sleep…..I hope. So we will speak tomorrow and let you know how we coped with all Weds adventures!!
Nite nite and lots of love to everyone. Thankyou for your loving prayers and support, as always.
Ella and Annette.xx
PS A special hello to Libby, Hannah and Grace. It was great to see you on Sunday. Did you get your new shoes?x
PPS Reg and Auntie Margaret are coming tomorrow with an ariel for the TV ( thanks Reggie) so we are hoping Reg can work his magic and get it tuned in.
Thursday 27 August 2009
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
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
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
Friday 31 July 2009
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
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
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.)
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