Day +138(Thurs) part2
What a heading eh? But I wanted to keep you updated properly, so here we are on Thus. night now. Ella is fast asleep, at the moment, Sally has gone for an early sleep ( she’ll take over at 4.00am) and I am waiting to meet Rachel….Ella’s nurse for tonight. I’ve just done a quick change act, in the cubicle, into my pj’s before she appears….didn’t want to frighten her. If you remember we can’t fit into the bathroom at night because the chair is in there!!
Ella’s day has been a real mixture of ups and downs. We had a procession to the ‘heart d’part’ at 9.00am….on the bouncy castle….and then when we got back the pain team came to change over the drugs. Things slipped downhill from then as it became apparent that the new idea didn’t suit Ella and she was still in pain. They came back and a new idea was started and that seems to have done the trick. The morphine is still stopped completely but has been taken over by fentanyl this time.
The other major change of course is that Ella has been allowed to have LITTLE tastes of drinks or food. As long as it can be aspirated back through her tube she can taste it. Soooo today she has had 2 tspns of mushroom soup, 3 tspns of tomato soup, 4 tspns of jelly and an assortment of sips of juice. Oh and she sucked a crisp earlier on! It is a real delight to see her little face light up when she isn’t denied a taste. We are going to have to keep the reigns on tightly, but she has realised herself, today, that it is a case of tiny steps!
Sally and I have had a strange day really. Most of it has been spent eating or walking around. There isn’t room in here to swing anything, let alone a cat, so you have to get out for a wander quite often. We have got used to the space back ‘home’ in Manchester, where at least we could revert to our cottage industries if Ella was asleep. Here, however, even the sacred ‘red box’ of goodies is in the bathroom! Sally did have a walk to Tesco earlier this afternoon for essential supplies and for goodies to fit into our posh new shelf in our posh new kitchen. As you can imagine, she staggered back with about 6 bags….it was a lot further on the way back!
Sally had a lovely call today from Kirsty and ‘the Manchester angels.’ She and all the team up there are so special to Ella and of course to us. They are going to try to get down to see her, maybe next week. Watch out Birmingham!! I know that Dr Rob (Wynn) has been asking about her every day and I feel that he would be encouraged if he could see her. There is a special bond between them, even if Ella did only speak in sign language to him, most of the time.
Something really nice happened to me today as well, I went to Church. There is a proper Church here in the hospital, on our floor. You know in some stately houses there is often a chapel? Well here there is one too, which is very traditional to look at, with pews and stained glass. It’s quite amazing, and is shared by all the faiths at some point in the week.
The builders who are working on this unit are on a tight schedule to finish by tomorrow afternoon. In fact they have been working through the night, for the last few. We have been told this is their second deadline….so they have to get their skates on for the big move on Sunday. From what we can see from our room it looks very nice indeed….bright and modern….and nurse Natalie has requested that Ella’s cubicle should have a bathroom, so we’ll have to see. Fingers and toes crossed eh?
Well, it’s 11.15pm and I’m going to finish. Ella has been awake a couple of times for drinks and things, but I am hoping that she will settle now and then I can switch the night light down a little more and have a snooze myself.
Night night, lots of love and thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx
Thursday 25 June 2009
Day +138 Weds.
Please excuse me putting the day next to the number up above, but we are so mixed up with days this week, it will help me to keep things in order if I write it down. ( what do they say about ‘ladies of a certain age’ and lists?) Actually, it is now first thing on Thurs morning, and I’m on catch up. Sally wanted to use the computer last night and that can be a very long session!
Quickly though back to all the news about Ella. The Dr’s here are beginning to get to grips with all the testing they need to put into action. Some things will be routine and others related to Ella specifically. Today the pain team are coming very early to change the drug completely from morphine to another called ketamine ( wrong spelling sorry) which works in a similar way, but is used to target bowel pain. They seem very confident that this will help Ella and Sally has agreed to take their advice. Secondly we are off to the heart d’part at 9.00 ( if the pain team have finished) for an echo test, following an ECG yesterday. Then I expect the gastro team and transplant team will have something up their sleeve for layer….we’ll wait and see.
Ella has a lovely new mattress….an air one….a bit like a bouncy castle. We had a visit from the ‘skin’ nurse yesterday, and she decided to err on the side of caution with Ella’s skin and order this for her. The steroids make the skin very fragile after a long time so right now she is floating on a pillow of air.
Yesterday was really hot and today looks as though it is going to be the same. We finally moved all our ‘stuff’ into the parents accom. upstairs. It was my first visit yesterday and I have to say it is really beautiful. The whole place has been designed around parents and family who are long stay. The rooms are lovely, and we even had chocolates on the bed to welcome us, not to mention some complimentary toiletries. There is low lighting, fab bathrooms, newly fitted kitchen and laundry together with a lounge, where families and siblings are welcome. Sam said this morning that she thinks it has been refurbished by Marks and Spencers. This isn’t just any parents accom………this is MnS ACCOM!!!!!
We have had lots of visits from the physios, teachers and play specialists….all of whom have had a frosty welcome from Ella so far today. They are coming back later….thank goodness they don’t give in and are experts in sorting out a ‘grumpy old hector’.
I am going to close now until later and get this posted off.
Bye for now, lots of love and thanks for your loving support and prayers.
Ella, Sally and Annette.xxx
Please excuse me putting the day next to the number up above, but we are so mixed up with days this week, it will help me to keep things in order if I write it down. ( what do they say about ‘ladies of a certain age’ and lists?) Actually, it is now first thing on Thurs morning, and I’m on catch up. Sally wanted to use the computer last night and that can be a very long session!
Quickly though back to all the news about Ella. The Dr’s here are beginning to get to grips with all the testing they need to put into action. Some things will be routine and others related to Ella specifically. Today the pain team are coming very early to change the drug completely from morphine to another called ketamine ( wrong spelling sorry) which works in a similar way, but is used to target bowel pain. They seem very confident that this will help Ella and Sally has agreed to take their advice. Secondly we are off to the heart d’part at 9.00 ( if the pain team have finished) for an echo test, following an ECG yesterday. Then I expect the gastro team and transplant team will have something up their sleeve for layer….we’ll wait and see.
Ella has a lovely new mattress….an air one….a bit like a bouncy castle. We had a visit from the ‘skin’ nurse yesterday, and she decided to err on the side of caution with Ella’s skin and order this for her. The steroids make the skin very fragile after a long time so right now she is floating on a pillow of air.
Yesterday was really hot and today looks as though it is going to be the same. We finally moved all our ‘stuff’ into the parents accom. upstairs. It was my first visit yesterday and I have to say it is really beautiful. The whole place has been designed around parents and family who are long stay. The rooms are lovely, and we even had chocolates on the bed to welcome us, not to mention some complimentary toiletries. There is low lighting, fab bathrooms, newly fitted kitchen and laundry together with a lounge, where families and siblings are welcome. Sam said this morning that she thinks it has been refurbished by Marks and Spencers. This isn’t just any parents accom………this is MnS ACCOM!!!!!
We have had lots of visits from the physios, teachers and play specialists….all of whom have had a frosty welcome from Ella so far today. They are coming back later….thank goodness they don’t give in and are experts in sorting out a ‘grumpy old hector’.
I am going to close now until later and get this posted off.
Bye for now, lots of love and thanks for your loving support and prayers.
Ella, Sally and Annette.xxx
Tuesday 23 June 2009
Day +136,137
Here we are again, but this time from our new home…..Birmingham! We are practising for our world tour, you know. There is quite a story to tell, as you may have guessed, so I’d better get on with it.
As you know I came home Sunday night so that Aunty Rachael could do the honours…very nice and a treat for me. I phoned Monday first thing and heard that Ella had been snuggling Rachael all night….eat your heart out Mummy and Nanna! There was no news about Birmingham, so we weren’t going. I’d just started my day properly with a third cup of tea, when Sally phoned…..yes we were going….get back quick! The rest of the day involved lots of coming and going… me to there, Rachael to home, us to Birmingham……but by 9.00pm we were in our new room.
Dr Wynn decided at the last minute that Ella should travel with ICU back up, so the Dr who actually travelled with Ella was from ICU, but one of her own nurses, Sarah, was allowed to travel as well. Much to Ella’s, not to mention our, relief. When the ambulance arrived the ICU team got her all strapped in, with such care and attention, all her medical trappings went in next and finally her ‘team’ including Mummy of course. Me?....I followed on with the old cock linnet!!!
The ambulance was travelling on blue lights so they had well and truly got ahead of me. I didn’t see them again until exit from the M6 when there they were just in front, so they were able to show me the way in to the hospital. Sally said that Ella was laughing her head off when they speeded up and put the sirens on!!
By the time I had found them in the cubicle Ella was in bed and Sarah was handing over her precious parcel to the new team. Sally and I were looking around us in dismay….at this teeny tiny space, without even curtains up at the windows, which looked onto a busy corridor. Sam, Ella’s new nurse for the night, was busy getting to grips with all the drugs etc and Sarah was as anxious as all of us that the hand over should be stress less for Ella. ( It wasn’t that for us, especially Sally, who really was tired and in need of a lot of TLC) Eventually Sarah and the team left, about an hour later, and we were left with 1 chair and a camp bed, which wouldn’t fit in if the chair was in too. I have to say that 2 hours later, when Ella had fallen asleep and we were finally having a cuppa, that we had to laugh at the situation. At times during the night there were 5 of us, all squashed into the smallest space ever…..with an NHS sheet across the window! HYSTERICAL.
That brings us to today, Tuesday. I am now sitting with Ella and she is fast asleep. It’s 10.45pm and Sally is having a sleep in our hotel room…yes you read it properly….hotel room! But first news of Ella. She has had a super day all in all. She has been settled and calm, and mostly pain free. The ways of doing things here are slightly different, but the care is still expert and we feel in safe hands, and that is the most important thing. There have been visits from various Dr’s…from the gastro team and the transplant team…and they all seem well up to date on Ella’s case. In fact Dr Wynn phoned Sally this morning, as well as the Drs here, to make sure it was all ok. I think some tests are likely tomorrow, now that Ella has had time to settle in.
Now to the hotel. Sally went to speak to the family liaison lady to explain that we couldn’t spend another night like last night and she completely sympathetic! They pay for hotel rooms under special circumstances at the very nearby Thistle, so we were given a room immediately, and then we are moving into the new, very swish parents’ accom on the 3rd floor here, tomorrow. Oh, and Ella’s room had lovely clean curtains up by 9.00am today. The staff are really very nice here, and everyone is so helpful and kind.
Sam is on duty again tonight and she has been telling me that on Sunday….guess what?...we are moving ! Can you believe it? There is building work on the unit at the moment, which we can’t see because of boarding. Anyway, it is a whole new unit with new cubicles etc…so we will be the first to use another state of the art department! We are really giving the NHS a trial run aren’t we?
I’m going to finish now and get this very long blog sent off. There are some photos to post tomorrow but for now, night night and thanks for your prayers and loving support.
Ella, Sally and Annette.xxx
PS Sally is coming back around midnight and then it is my turn to try out the hotel room. That’s the plan anyway…if she wakes up in time.
PPS Many thanks to Ian’s Aunty and Uncle who have very kindly agreed to ‘car sit’ while we are here. They live not too far away, so it is really helping with car parking expenses. At £10 a day it could be very expensive!
PPPS Hi to everyone at Manchester. We miss you. Hope you are in the new unit and enjoying it. Ella sends a big love and wants to know what you all had for tea?x
Here we are again, but this time from our new home…..Birmingham! We are practising for our world tour, you know. There is quite a story to tell, as you may have guessed, so I’d better get on with it.
As you know I came home Sunday night so that Aunty Rachael could do the honours…very nice and a treat for me. I phoned Monday first thing and heard that Ella had been snuggling Rachael all night….eat your heart out Mummy and Nanna! There was no news about Birmingham, so we weren’t going. I’d just started my day properly with a third cup of tea, when Sally phoned…..yes we were going….get back quick! The rest of the day involved lots of coming and going… me to there, Rachael to home, us to Birmingham……but by 9.00pm we were in our new room.
Dr Wynn decided at the last minute that Ella should travel with ICU back up, so the Dr who actually travelled with Ella was from ICU, but one of her own nurses, Sarah, was allowed to travel as well. Much to Ella’s, not to mention our, relief. When the ambulance arrived the ICU team got her all strapped in, with such care and attention, all her medical trappings went in next and finally her ‘team’ including Mummy of course. Me?....I followed on with the old cock linnet!!!
The ambulance was travelling on blue lights so they had well and truly got ahead of me. I didn’t see them again until exit from the M6 when there they were just in front, so they were able to show me the way in to the hospital. Sally said that Ella was laughing her head off when they speeded up and put the sirens on!!
By the time I had found them in the cubicle Ella was in bed and Sarah was handing over her precious parcel to the new team. Sally and I were looking around us in dismay….at this teeny tiny space, without even curtains up at the windows, which looked onto a busy corridor. Sam, Ella’s new nurse for the night, was busy getting to grips with all the drugs etc and Sarah was as anxious as all of us that the hand over should be stress less for Ella. ( It wasn’t that for us, especially Sally, who really was tired and in need of a lot of TLC) Eventually Sarah and the team left, about an hour later, and we were left with 1 chair and a camp bed, which wouldn’t fit in if the chair was in too. I have to say that 2 hours later, when Ella had fallen asleep and we were finally having a cuppa, that we had to laugh at the situation. At times during the night there were 5 of us, all squashed into the smallest space ever…..with an NHS sheet across the window! HYSTERICAL.
That brings us to today, Tuesday. I am now sitting with Ella and she is fast asleep. It’s 10.45pm and Sally is having a sleep in our hotel room…yes you read it properly….hotel room! But first news of Ella. She has had a super day all in all. She has been settled and calm, and mostly pain free. The ways of doing things here are slightly different, but the care is still expert and we feel in safe hands, and that is the most important thing. There have been visits from various Dr’s…from the gastro team and the transplant team…and they all seem well up to date on Ella’s case. In fact Dr Wynn phoned Sally this morning, as well as the Drs here, to make sure it was all ok. I think some tests are likely tomorrow, now that Ella has had time to settle in.
Now to the hotel. Sally went to speak to the family liaison lady to explain that we couldn’t spend another night like last night and she completely sympathetic! They pay for hotel rooms under special circumstances at the very nearby Thistle, so we were given a room immediately, and then we are moving into the new, very swish parents’ accom on the 3rd floor here, tomorrow. Oh, and Ella’s room had lovely clean curtains up by 9.00am today. The staff are really very nice here, and everyone is so helpful and kind.
Sam is on duty again tonight and she has been telling me that on Sunday….guess what?...we are moving ! Can you believe it? There is building work on the unit at the moment, which we can’t see because of boarding. Anyway, it is a whole new unit with new cubicles etc…so we will be the first to use another state of the art department! We are really giving the NHS a trial run aren’t we?
I’m going to finish now and get this very long blog sent off. There are some photos to post tomorrow but for now, night night and thanks for your prayers and loving support.
Ella, Sally and Annette.xxx
PS Sally is coming back around midnight and then it is my turn to try out the hotel room. That’s the plan anyway…if she wakes up in time.
PPS Many thanks to Ian’s Aunty and Uncle who have very kindly agreed to ‘car sit’ while we are here. They live not too far away, so it is really helping with car parking expenses. At £10 a day it could be very expensive!
PPPS Hi to everyone at Manchester. We miss you. Hope you are in the new unit and enjoying it. Ella sends a big love and wants to know what you all had for tea?x
Sunday 21 June 2009
Day +133,134,135
Well we’re here! What an adventure we’ve had this weekend!
It was decided that Ella should move with the main ward, on Friday. We were up and getting organised really early, as I said Dr Wynn was doing his ward round at 7.00am onwards, to assess who was going home or moving. We waited for him to come with baited breath, quite comical really, and by now the whole place was buzzing with the moving teams. He reassured Ella that she would be very safe and well looked after, and that her nurses would be here to meet us etc, and who would she like to travel with her in the ambulance? Of course Mummy, a nurse and who else but Dr Wynn himself! I think he was chuffed too….so that is what happened….and he held her hands all the way here. The move went really smoothly. It was so well organised, down to the last detail. Even I had a special welcomer to meet me, as I arrived at the car park. So, by 4.00pm we were all in our cubicle with our nurses waiting.
At this point Dr Wynn called Sally out, to tell her that there was a bed at Birmingham, and that we would be going the next day, Saturday! To cut a long story short we reorganised the weekend very quickly. Daddy came straight over so that he could see Ella before we left and Sally and I came back home for the night. Of course, by the time I phoned Damian on Sat. morning we were into ‘plan z’, because the Birmingham bed had been taken and the transfer was cancelled until at least Monday! So, here we are on Sunday evening wondering what Monday morning will bring.
We are, however, sat in a very new, state of the art, swish building, surrounded by the latest technology. All the staff seem to be settled in their new environment and the BMU nurses are all working really hard to get it up and running by tomorrow. As you know Ella isn’t in there yet…there have been delays with the air purifying system….but she has been promised her choice of room tomorrow morning. Sally, Damian and I had a look around earlier and it is very nice indeed….. extremely clinical…. and it will be a real culture shock for everyone, but never the less a fabulous atmosphere for children and their ‘angel staff’ alike. They all deserve to have the very best don’t they? Between all of us grown ups we have decided that Ella’s bathroom should have a bath, rather than a wet room. We should have some fun in that, don’t you think?
Anyway, Auntie Rachael has just arrived and suddenly the room looks full…no reflection on Rachael of course, but there is definitely less space, so it looks as though I have been designated to go home for the night and let our favourite Aunty do the honours tonight.
As for Ella, she has had a much better day today, with less tummy ache. Last night was a ‘busy’ night, with xrays and Drs at the ready….but things have calmed down again, so we are looking forward to a peaceful night tonight.
I have tried to include a couple of photos of the moving day, but we are having trouble getting a connection on the dongle…… so we may or not be successful. Hope we are and that you suitably impressed. ( Dr Wynn is sat right in the back of the ambulance.)
Night night from all of us in Manchester, and as usual thankyou for your prayers and loving support.
Ella, Sally, Annette and Rachael.xxxx
Well we’re here! What an adventure we’ve had this weekend!
It was decided that Ella should move with the main ward, on Friday. We were up and getting organised really early, as I said Dr Wynn was doing his ward round at 7.00am onwards, to assess who was going home or moving. We waited for him to come with baited breath, quite comical really, and by now the whole place was buzzing with the moving teams. He reassured Ella that she would be very safe and well looked after, and that her nurses would be here to meet us etc, and who would she like to travel with her in the ambulance? Of course Mummy, a nurse and who else but Dr Wynn himself! I think he was chuffed too….so that is what happened….and he held her hands all the way here. The move went really smoothly. It was so well organised, down to the last detail. Even I had a special welcomer to meet me, as I arrived at the car park. So, by 4.00pm we were all in our cubicle with our nurses waiting.
At this point Dr Wynn called Sally out, to tell her that there was a bed at Birmingham, and that we would be going the next day, Saturday! To cut a long story short we reorganised the weekend very quickly. Daddy came straight over so that he could see Ella before we left and Sally and I came back home for the night. Of course, by the time I phoned Damian on Sat. morning we were into ‘plan z’, because the Birmingham bed had been taken and the transfer was cancelled until at least Monday! So, here we are on Sunday evening wondering what Monday morning will bring.
We are, however, sat in a very new, state of the art, swish building, surrounded by the latest technology. All the staff seem to be settled in their new environment and the BMU nurses are all working really hard to get it up and running by tomorrow. As you know Ella isn’t in there yet…there have been delays with the air purifying system….but she has been promised her choice of room tomorrow morning. Sally, Damian and I had a look around earlier and it is very nice indeed….. extremely clinical…. and it will be a real culture shock for everyone, but never the less a fabulous atmosphere for children and their ‘angel staff’ alike. They all deserve to have the very best don’t they? Between all of us grown ups we have decided that Ella’s bathroom should have a bath, rather than a wet room. We should have some fun in that, don’t you think?
Anyway, Auntie Rachael has just arrived and suddenly the room looks full…no reflection on Rachael of course, but there is definitely less space, so it looks as though I have been designated to go home for the night and let our favourite Aunty do the honours tonight.
As for Ella, she has had a much better day today, with less tummy ache. Last night was a ‘busy’ night, with xrays and Drs at the ready….but things have calmed down again, so we are looking forward to a peaceful night tonight.
I have tried to include a couple of photos of the moving day, but we are having trouble getting a connection on the dongle…… so we may or not be successful. Hope we are and that you suitably impressed. ( Dr Wynn is sat right in the back of the ambulance.)
Night night from all of us in Manchester, and as usual thankyou for your prayers and loving support.
Ella, Sally, Annette and Rachael.xxxx
Thursday 18 June 2009
Day +132
Here we are on what we thought would be the anti penultimate day, but which now may be the penultimate day after all……….oh….something like that anyway! In other words we may be moving tomorrow ( Friday) instead of Saturday! Why? Because Ella may be the only patient left on the unit by the end of tomorrow and it seems unnecessary to move her on her own, on Saturday, when she could move with the main oncology ward tomorrow. She will still be in a cubicle over night, then moved again onto the BMU on Saturday. If it does happen this way we have been promised that Ella’s night nurses will go over for the night too, so that she can be nursed by people she recognises. We want it to be a positive experience from the start. Sally is happy with that and Ella is comfortable with it too. Of course that may change again if the unit fills up suddenly, or if we get the call from Birmingham. Watch this space.
The consequence of all this has been that whilst Ella has snoozed, ( all day), Sally and I have been frantically ‘reshuffling’ our ‘don’t know what to do with it ‘ pile. I have to admit though that the room is now looking very smart….very bare….but very ‘now’. In the meantime the inside of my car looks like a car boot sale!
Dr Wynn is doing a very early morning ward round tomorrow, so that he can make decisions about who is going. It means an early start for us all too. The first patient is due to leave at 9.00am ish. I just hope it’s not Ella ….we are usually just having our toast then!
Well it’s now 5.15am and I’m continuing with the blog this morning, I ran out of steam again last night. I must tell you our latest family news though….Sally and Ian have become engaged. They went out for tea last night and Ian proposed….ahhhh! and when they got back here Sally was wearing the most beautiful ring. Ahhh! Lots of love and happiness to them both.xx
Sally is asleep on the bed/settee at the moment and she gave me strict instructions to wake her up before Dr Wynn appears at 7.00am. I have got the feeling that we will be going today, there haven’t been any more admissions over night so far, so we could well be speaking to you from our new ‘hotel’ tonight.
I ‘d best close now and then I can get my head organised, if nothing else.
Lots of love and thankyou as always for your prayers and loving support.
Ella, Sally and Annette.xxx
PS Really pleased to hear you are all wearing smiles Sue.x
Here we are on what we thought would be the anti penultimate day, but which now may be the penultimate day after all……….oh….something like that anyway! In other words we may be moving tomorrow ( Friday) instead of Saturday! Why? Because Ella may be the only patient left on the unit by the end of tomorrow and it seems unnecessary to move her on her own, on Saturday, when she could move with the main oncology ward tomorrow. She will still be in a cubicle over night, then moved again onto the BMU on Saturday. If it does happen this way we have been promised that Ella’s night nurses will go over for the night too, so that she can be nursed by people she recognises. We want it to be a positive experience from the start. Sally is happy with that and Ella is comfortable with it too. Of course that may change again if the unit fills up suddenly, or if we get the call from Birmingham. Watch this space.
The consequence of all this has been that whilst Ella has snoozed, ( all day), Sally and I have been frantically ‘reshuffling’ our ‘don’t know what to do with it ‘ pile. I have to admit though that the room is now looking very smart….very bare….but very ‘now’. In the meantime the inside of my car looks like a car boot sale!
Dr Wynn is doing a very early morning ward round tomorrow, so that he can make decisions about who is going. It means an early start for us all too. The first patient is due to leave at 9.00am ish. I just hope it’s not Ella ….we are usually just having our toast then!
Well it’s now 5.15am and I’m continuing with the blog this morning, I ran out of steam again last night. I must tell you our latest family news though….Sally and Ian have become engaged. They went out for tea last night and Ian proposed….ahhhh! and when they got back here Sally was wearing the most beautiful ring. Ahhh! Lots of love and happiness to them both.xx
Sally is asleep on the bed/settee at the moment and she gave me strict instructions to wake her up before Dr Wynn appears at 7.00am. I have got the feeling that we will be going today, there haven’t been any more admissions over night so far, so we could well be speaking to you from our new ‘hotel’ tonight.
I ‘d best close now and then I can get my head organised, if nothing else.
Lots of love and thankyou as always for your prayers and loving support.
Ella, Sally and Annette.xxx
PS Really pleased to hear you are all wearing smiles Sue.x
Wednesday 17 June 2009
Days +129,130,131
Hello from us all back in Manchester, with a newly spruced up computer in use.( it has been back to Southport for it’s wash and brush up, sorry about the missing days). The weather here today has been awful, lots and lots of rain, but now it’s early evening and the sun has been cracking the flags. I need to tell you how Ella is getting along first though.
We have been through a lot of ups and downs over the last few days. The major concerns have been pain relief, which still isn’t spot on yet at times, and then also Ella’s lines, which haven’t been working again! This has all meant Dr’s visits in the night, bloods taken from her arms and hands instead of the lines, until finally she went down to theatre today to have a new line. This one is working beautifully and at last we can catch up with treatments she fell behind with. ( 3rd time lucky)
There has been a lot of discussion about the next steps in sorting out Ella’s tummy and it has been decided to transfer us to Birmingham, where there is a specialist unit. We have a provisional date for early July, although Dr Wynn has said that we may be on 24hrs notice if a vacancy occurs at the other end. There will be quite a lot of ‘sorting’ to do to get us there as well, because Ella will need a nurse, and probably a Dr, to travel down with her.
In the meantime, we have been really busy getting ourselves organised for the big move on Saturday. The cubicle has been nearly stripped of all our treasures, although the minute we think we are on top of it some one else arrives with another treat for the Princess, which is only right and proper, of course. Daddy came today, Wednesday, and it gave me and Sally some time to sort the cave, together. Sally must have every item of clothing she possesses here, and I’m not far behind. We were trying to fit it all into a small holdall…..which didn’t work…..so we compromised on Sally’s largest suitcase between us!!! All the extras like shoes, hair dryer, books, towels, snugglies, makeup…..will all have to live in the car, wherever we end up. The accommodation at the new hospital is a pull down bed for the bedside person and then sharing a 3 bed room with 2 other ladies ( with NO storage to speak of). We have absolutely no idea about Birmingham yet. Jo, the co-ordinator, is trying to find out for us…she thinks there may be a Ronald McDonald house there! I’m sure we will be well cared for.
There have been many highs this week, including watching Ann making the promised penguins…lovely, a visit from Reg….who came bearing more Sylvanians and then a Chinese takeaway with Ian ( picnic style ), which Sally laid out on Ella’s bed so she could see what we were eating and choose what we had next.
Oh, I nearly forgot to tell you. Ella’s wobbly tooth came out in theatre today, ssooooooooooo the fairies will be coming tonight! They will have to collect it from the theatre, because it’s not allowed back up here, but we have got a special tooth fairy pouch from the Dr to put under Ella’s pillow tonight. How about that then?
Ella is such a brave little person….she has been through so many trials, especially over the last few weeks, she is an inspiration!
I’m going to finish now….it’s actually 4.30am on Thursday morning ( I ran out of steam last night). The fairies HAVE been, although Ella doesn’t know yet. Nurse Niki thought she heard some fluttering about 3.00am!! She wasn’t sure if it was a fairy or Sally.
Bye for now and we’ll try and catch up again tonight to get us back on track.
Lots of love to everyone and as usual our thanks for your loving concern and prayers, which are very important to us.
Ella, Sally and Annette.xxx
PS Hi Janet, hope all is well with you. Sorry we didn’t get to see you before we moved.x
PPS. Hello to everyone at St John’s…..wish you well for the Ofsted.
Hello from us all back in Manchester, with a newly spruced up computer in use.( it has been back to Southport for it’s wash and brush up, sorry about the missing days). The weather here today has been awful, lots and lots of rain, but now it’s early evening and the sun has been cracking the flags. I need to tell you how Ella is getting along first though.
We have been through a lot of ups and downs over the last few days. The major concerns have been pain relief, which still isn’t spot on yet at times, and then also Ella’s lines, which haven’t been working again! This has all meant Dr’s visits in the night, bloods taken from her arms and hands instead of the lines, until finally she went down to theatre today to have a new line. This one is working beautifully and at last we can catch up with treatments she fell behind with. ( 3rd time lucky)
There has been a lot of discussion about the next steps in sorting out Ella’s tummy and it has been decided to transfer us to Birmingham, where there is a specialist unit. We have a provisional date for early July, although Dr Wynn has said that we may be on 24hrs notice if a vacancy occurs at the other end. There will be quite a lot of ‘sorting’ to do to get us there as well, because Ella will need a nurse, and probably a Dr, to travel down with her.
In the meantime, we have been really busy getting ourselves organised for the big move on Saturday. The cubicle has been nearly stripped of all our treasures, although the minute we think we are on top of it some one else arrives with another treat for the Princess, which is only right and proper, of course. Daddy came today, Wednesday, and it gave me and Sally some time to sort the cave, together. Sally must have every item of clothing she possesses here, and I’m not far behind. We were trying to fit it all into a small holdall…..which didn’t work…..so we compromised on Sally’s largest suitcase between us!!! All the extras like shoes, hair dryer, books, towels, snugglies, makeup…..will all have to live in the car, wherever we end up. The accommodation at the new hospital is a pull down bed for the bedside person and then sharing a 3 bed room with 2 other ladies ( with NO storage to speak of). We have absolutely no idea about Birmingham yet. Jo, the co-ordinator, is trying to find out for us…she thinks there may be a Ronald McDonald house there! I’m sure we will be well cared for.
There have been many highs this week, including watching Ann making the promised penguins…lovely, a visit from Reg….who came bearing more Sylvanians and then a Chinese takeaway with Ian ( picnic style ), which Sally laid out on Ella’s bed so she could see what we were eating and choose what we had next.
Oh, I nearly forgot to tell you. Ella’s wobbly tooth came out in theatre today, ssooooooooooo the fairies will be coming tonight! They will have to collect it from the theatre, because it’s not allowed back up here, but we have got a special tooth fairy pouch from the Dr to put under Ella’s pillow tonight. How about that then?
Ella is such a brave little person….she has been through so many trials, especially over the last few weeks, she is an inspiration!
I’m going to finish now….it’s actually 4.30am on Thursday morning ( I ran out of steam last night). The fairies HAVE been, although Ella doesn’t know yet. Nurse Niki thought she heard some fluttering about 3.00am!! She wasn’t sure if it was a fairy or Sally.
Bye for now and we’ll try and catch up again tonight to get us back on track.
Lots of love to everyone and as usual our thanks for your loving concern and prayers, which are very important to us.
Ella, Sally and Annette.xxx
PS Hi Janet, hope all is well with you. Sorry we didn’t get to see you before we moved.x
PPS. Hello to everyone at St John’s…..wish you well for the Ofsted.
Sunday 14 June 2009
Days +127,128
Hello and welcome on board the ‘Marie Celeste’ or at least what feels like it at the moment. There are just 2 children, Ella and Amy, here this weekend and it feels very different indeed, because there hasn’t been the hustle and bustle of everyday life. Plus the fact of course it’s usually quieter at weekends.
( We must say hello to Peter….who moved to a hospital nearer home, on Friday. He was our next door neighbour and had been here for 10 months or so. Hope you have ‘settled in’ Peter. Love to you and your Mum.)
Ella has had a good couple of days. Daddy took over on Saturday and after the initial ‘change over’ anxiety, I know that Ella had a very good nights sleep….about 7 hours according to Daddy! The Drs and surgeons have kept a very close eye this weekend. Nobody wants to have to intervene.
The cubicle is looking even more bare now. We are at the stage where there are ‘bits’ of things around, which don’t fit into either category….either ‘to take’ or ‘to stay’. Then of course there are the definites to go, which we can’t pack yet, like Tiger and Elizabeth. We received more info on Friday about the move. Ella is allowed to take a small holdall and a small teddy …………….ummmmm! Do princesses travel that light usually? There hasn’t been any mention of the ‘red box’. I may have to smuggle that in under the cover of darkness.
Sally and I arrived back at teatime ( Sunday) with Sam….who came along to see big sister. Ella phoned us when we were on the way, to make sure that we were here for teatime , so that she could give Sam his tea.
Ella fell asleep last night wearing her 2 new ‘glow in dark’ bracelets. What with them, the monitor on her toe, the fibre optic lamp and the fairies it was like Blackpool!
It’s around 5.30am now and Kelly has been in to Ella do various jobs. I’ve just finished a cuppa and Sally is snoozing peacefully. I’m just persuading Ella that she doesn’t need that drink and that she can go back to sleep if she really tries. I may even join her for a quick nap if she settles.
Bye for now anyway and we send you lots of love and our thanks for all your prayers and support.
Ella, Sally and Annette.xxx
Hello and welcome on board the ‘Marie Celeste’ or at least what feels like it at the moment. There are just 2 children, Ella and Amy, here this weekend and it feels very different indeed, because there hasn’t been the hustle and bustle of everyday life. Plus the fact of course it’s usually quieter at weekends.
( We must say hello to Peter….who moved to a hospital nearer home, on Friday. He was our next door neighbour and had been here for 10 months or so. Hope you have ‘settled in’ Peter. Love to you and your Mum.)
Ella has had a good couple of days. Daddy took over on Saturday and after the initial ‘change over’ anxiety, I know that Ella had a very good nights sleep….about 7 hours according to Daddy! The Drs and surgeons have kept a very close eye this weekend. Nobody wants to have to intervene.
The cubicle is looking even more bare now. We are at the stage where there are ‘bits’ of things around, which don’t fit into either category….either ‘to take’ or ‘to stay’. Then of course there are the definites to go, which we can’t pack yet, like Tiger and Elizabeth. We received more info on Friday about the move. Ella is allowed to take a small holdall and a small teddy …………….ummmmm! Do princesses travel that light usually? There hasn’t been any mention of the ‘red box’. I may have to smuggle that in under the cover of darkness.
Sally and I arrived back at teatime ( Sunday) with Sam….who came along to see big sister. Ella phoned us when we were on the way, to make sure that we were here for teatime , so that she could give Sam his tea.
Ella fell asleep last night wearing her 2 new ‘glow in dark’ bracelets. What with them, the monitor on her toe, the fibre optic lamp and the fairies it was like Blackpool!
It’s around 5.30am now and Kelly has been in to Ella do various jobs. I’ve just finished a cuppa and Sally is snoozing peacefully. I’m just persuading Ella that she doesn’t need that drink and that she can go back to sleep if she really tries. I may even join her for a quick nap if she settles.
Bye for now anyway and we send you lots of love and our thanks for all your prayers and support.
Ella, Sally and Annette.xxx
Friday 12 June 2009
Days +125, +126
I can’t believe that another 2 busy days have passed since we last blogged….but they have , so here we go with the latest news.
At the moment Ella is having more comfortable days and nights……. particularly during the day she has been more awake and able to join in with everyday life. For the last week or so she has been heavily sedated, as the Drs are changing her pain relief from morphine to a drug called fentanyl. She has to be weaned off the morphine VERY slowly. Last week saw a hiccup, as possibly this was done perhaps a little too fast and we ended up at square one again. The fentanyl comes in patches (and of course the lollies) so that when the I V morphine is off completely, then Ella can come off her lines again, for part of the day. Roll on that day. Those bambi legs need to be out of bed! Of course that means she will need to get dressed again. We were teasing her the other day, that not only might she be becoming nocturnal, but that also she HAS become a nudist! There again, who doesn’t like to lie in bed, surrounded by pillows, with no clothes on?
On Wednesday we had a short, but sweet, visit from Simon…fresh from their holiday in Cornwall. He dropped by to see Ella and to hand over yet another sponsor cheque. He has totalled us again, which is £656 to date. Once again, many thanks Simon and to everyone who sponsored him. I know the staff, on the unit here, are delighted with your donations.
Simon actually arrived in the middle of Sally and I packing up and trying to organise exactly what we will be taking with us, when we move. We seemed to have so much stuff to choose from….and every time one of the staff came in it seemed to have grown. Anyway, by teatime we had it sorted, and then fell exhausted in a heap as we admired the ONE box of treasures to take!! What is in it you may ask? Well, favourite books, DVDs, arty things, not to forget makeup and of course….Mrs Doubtfire.
Fortunately for us, the senior member of the Blackburn family came yesterday (Thursday) and he was able to take back home all the filled boxes and a few odds and bobs. Oh, and the electric radiator….remember that from the early
days in the igloo? There is a lovely picture of Ella, and the cake she made with Reg, and Reg of course, taken yesterday.
We went for a drive out, to find the new hospital yesterday afternoon. Mmmmm….. what a caffufle! We got there in the end, and I’ve no doubt that a second ‘go’ will be much easier than the first. Why do planners have to build city centre hospitals? The site is huge and is plonked right in the middle of the city. Anyway, I’m sure they know what they are doing.
It’s now almost midday on Friday….and we are still running very late. Ella has had a very difficult morning coping with tummy ache. The pain team have been in, led by an anaesthetist, to give extra help. At the moment she is resting and it seems like a good time to get this posted.
Lots of love to everyone and as usual we send our thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx
I can’t believe that another 2 busy days have passed since we last blogged….but they have , so here we go with the latest news.
At the moment Ella is having more comfortable days and nights……. particularly during the day she has been more awake and able to join in with everyday life. For the last week or so she has been heavily sedated, as the Drs are changing her pain relief from morphine to a drug called fentanyl. She has to be weaned off the morphine VERY slowly. Last week saw a hiccup, as possibly this was done perhaps a little too fast and we ended up at square one again. The fentanyl comes in patches (and of course the lollies) so that when the I V morphine is off completely, then Ella can come off her lines again, for part of the day. Roll on that day. Those bambi legs need to be out of bed! Of course that means she will need to get dressed again. We were teasing her the other day, that not only might she be becoming nocturnal, but that also she HAS become a nudist! There again, who doesn’t like to lie in bed, surrounded by pillows, with no clothes on?
On Wednesday we had a short, but sweet, visit from Simon…fresh from their holiday in Cornwall. He dropped by to see Ella and to hand over yet another sponsor cheque. He has totalled us again, which is £656 to date. Once again, many thanks Simon and to everyone who sponsored him. I know the staff, on the unit here, are delighted with your donations.
Simon actually arrived in the middle of Sally and I packing up and trying to organise exactly what we will be taking with us, when we move. We seemed to have so much stuff to choose from….and every time one of the staff came in it seemed to have grown. Anyway, by teatime we had it sorted, and then fell exhausted in a heap as we admired the ONE box of treasures to take!! What is in it you may ask? Well, favourite books, DVDs, arty things, not to forget makeup and of course….Mrs Doubtfire.
Fortunately for us, the senior member of the Blackburn family came yesterday (Thursday) and he was able to take back home all the filled boxes and a few odds and bobs. Oh, and the electric radiator….remember that from the early
days in the igloo? There is a lovely picture of Ella, and the cake she made with Reg, and Reg of course, taken yesterday.
We went for a drive out, to find the new hospital yesterday afternoon. Mmmmm….. what a caffufle! We got there in the end, and I’ve no doubt that a second ‘go’ will be much easier than the first. Why do planners have to build city centre hospitals? The site is huge and is plonked right in the middle of the city. Anyway, I’m sure they know what they are doing.
It’s now almost midday on Friday….and we are still running very late. Ella has had a very difficult morning coping with tummy ache. The pain team have been in, led by an anaesthetist, to give extra help. At the moment she is resting and it seems like a good time to get this posted.
Lots of love to everyone and as usual we send our thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx
Tuesday 9 June 2009
Day +124
Good morning to chilly Manchester. The weather is really starting to break up now and the forecast for tomorrow is horrid.
Anyway, we are warm in here…..too warm at times and the fan is well and truly in use. We have had a happy day, with a visit from Auntie Rachael, Sam and Diane. ( Sam had a day off school, sorry Mrs Robinson). We were expecting them early, around 9.00am, so it was quick showers for us while Ella slept on.
Ella was asleep when they arrived, so it was a case of entertaining Sam quietly. The restaurant seemed to be the best place. He wuffed 2 sausage and beans, all topped off with a can of ‘lucazade’ ( thanks Diane….). He was bouncing off the walls after, that I an tell you.
We had a treat this morning too, Ann came back to show Ella how to make a sugar elephant. As you can see from the photos we were all taking it in. Diane was even promising to call at Tesco on the way home, to buy the ‘stuff’ to make her own. Ann asked Sam what else he would like to see….his answer….penguins! As she disappeared I think she said something about Friday….when she’s practised!)
Rachael kept Sam occupied with a bath bomb session…another blue one….which he took home to have in the bath tonight at Daddy’s. Ummm. Hope Damian’s got some Ajax ready.
We had chats with some of the staff today, about the move and what will happen on that day. All the arrangements have been made, right down to the last detail, and we don’t appear to have anything to worry about. They are expecting it to take more or less all day to move this unit….each child travelling by ambulance with a parent and nurse, with a team of nurses to see them off and another team to welcome them at the other end.
Sally and I had a lovely tea tonight…cannelloni. We had all the things ready for Ella to make it, but she fell into quite a deep sleep and that was that! We had to feed ourselves tonight.
I’m going to finish soon. It’s 3.30am and Sally will be up from the cave soon, to take over. It has been one of those restless nights for Ella….little miss fidget. Drinks, icepops, change pillows round, toilet…..You name it and it has kept Ella from sleeping. At last though, she has dropped off within the last 15mins. Nurse Kirsty is sooooo patient, not to mention competent, she is a breath of fresh air!!!!
So, night night, lots of love to everyone and our usual thanks for your prayers and support.
Ella,Sally and Annette.xxx
PS Hope you like the photos. The caption for Rachael’s should read……’does my bum look big in these?’ x
PPS The answer is NO if you are reading this, Rachael.xx
Good morning to chilly Manchester. The weather is really starting to break up now and the forecast for tomorrow is horrid.
Anyway, we are warm in here…..too warm at times and the fan is well and truly in use. We have had a happy day, with a visit from Auntie Rachael, Sam and Diane. ( Sam had a day off school, sorry Mrs Robinson). We were expecting them early, around 9.00am, so it was quick showers for us while Ella slept on.
Ella was asleep when they arrived, so it was a case of entertaining Sam quietly. The restaurant seemed to be the best place. He wuffed 2 sausage and beans, all topped off with a can of ‘lucazade’ ( thanks Diane….). He was bouncing off the walls after, that I an tell you.
We had a treat this morning too, Ann came back to show Ella how to make a sugar elephant. As you can see from the photos we were all taking it in. Diane was even promising to call at Tesco on the way home, to buy the ‘stuff’ to make her own. Ann asked Sam what else he would like to see….his answer….penguins! As she disappeared I think she said something about Friday….when she’s practised!)
Rachael kept Sam occupied with a bath bomb session…another blue one….which he took home to have in the bath tonight at Daddy’s. Ummm. Hope Damian’s got some Ajax ready.
We had chats with some of the staff today, about the move and what will happen on that day. All the arrangements have been made, right down to the last detail, and we don’t appear to have anything to worry about. They are expecting it to take more or less all day to move this unit….each child travelling by ambulance with a parent and nurse, with a team of nurses to see them off and another team to welcome them at the other end.
Sally and I had a lovely tea tonight…cannelloni. We had all the things ready for Ella to make it, but she fell into quite a deep sleep and that was that! We had to feed ourselves tonight.
I’m going to finish soon. It’s 3.30am and Sally will be up from the cave soon, to take over. It has been one of those restless nights for Ella….little miss fidget. Drinks, icepops, change pillows round, toilet…..You name it and it has kept Ella from sleeping. At last though, she has dropped off within the last 15mins. Nurse Kirsty is sooooo patient, not to mention competent, she is a breath of fresh air!!!!
So, night night, lots of love to everyone and our usual thanks for your prayers and support.
Ella,Sally and Annette.xxx
PS Hope you like the photos. The caption for Rachael’s should read……’does my bum look big in these?’ x
PPS The answer is NO if you are reading this, Rachael.xx
PPPS Ella was having a 'lie in'.x
Monday 8 June 2009
Day +121,122,123
Here we are again, on the other side of a busy weekend! Hope you all had a restful time away from work, and for those just about to begin work again….teachers and pupils….hope you all have a really good start to the new half term.
I’ll give you a quick catch up on the weekend here first of all.
Saturday morning was really quiet, after a calm night, except for Sam that is. He had landed very early to see Ella and of course was full of beans! Ella on the other hand was fast asleep all morning, as we waited for Daddy to arrive to take over,for the night. His arrival was quite exciting really, he landed with 4 little boy cousins and Uncle Gad ,all peeping through the door. They couldn’t come in sadly, but Ella had a little wave to them and promptly fell back to sleep again. Including Sam that made 5 little boys, all visiting!No wonder she went back to sleep.
After a bit of sorting out Sally and I left for home and when I phoned Damian later he said that Ella had been bathed was sitting up for a while during the afternoon.
Sunday morning was another sleepy one, for both Ella and Daddy, but by the time Sally and I arrived back Ella had been sat out on the bed/settee and was now back in bed ! It’s a case of taking advantage of the moment just now!
While I was home I emptied a couple of the boxes…ready to refill with some of the treasures we have accumulated over the months, and which can’t move to the new hospital. We are getting there, honestly. Apparently we can take one box, which has to include EVERYTHING. Watch this space…..
We have had, in fact we are still having, a very nice visit from Kate and Steven. They came along this afternoon and have been having a good chat with Sally. They have all just popped out to the Restaurant for a break, so it gives me a bit of time to ‘blog’ before Corrie starts. They brought 2 gorgeous dresses for Ella and a DVD of her favourite programme…..’Wild at Heart’….guess what we’ll be watching tomorrow. Actually, as I speak, Ella has woken up for an ice pop….as you do…..and at last Kate and Steven have seen her awake. She has been her chatty self. Lovely!
I’ve made several trips over to the washing machine in the igloo, to retrieve one of our snuggglies which has been in there for at least 3 hrs. ( I think another washer has bitten the dust). Finally, I had to end the programme and lug it back dripping. It seemed the best plan to hang it over the shower rail to dry, but not before Kate and I had tried our best to squeeze it. It’s still there now….dripping in all it’s glory.
We have had a lovely evening with Ella. She has fed us fruit, chatted away, started a new word search ( she really is brilliant, even at hard ones) and enjoyed 3 stories from her Milly Molly Mandy story book! Not bad for someone who has snoozed all day?
We are going to finish now and say night night. As usual we send all our love and thanks, for your loving support and prayers.
Ella, Sally and Annette.xxx
PS Hi Sam and Grace....how did you get on for the first day back at school?
PPS Hi Uncle John....sorry we missed you.xx
PPS We'll try to put some photos on tomorrow if Sleeping Beauty wakes up in time. Mind you we'll need a handsome prince....any ideas?
Here we are again, on the other side of a busy weekend! Hope you all had a restful time away from work, and for those just about to begin work again….teachers and pupils….hope you all have a really good start to the new half term.
I’ll give you a quick catch up on the weekend here first of all.
Saturday morning was really quiet, after a calm night, except for Sam that is. He had landed very early to see Ella and of course was full of beans! Ella on the other hand was fast asleep all morning, as we waited for Daddy to arrive to take over,for the night. His arrival was quite exciting really, he landed with 4 little boy cousins and Uncle Gad ,all peeping through the door. They couldn’t come in sadly, but Ella had a little wave to them and promptly fell back to sleep again. Including Sam that made 5 little boys, all visiting!No wonder she went back to sleep.
After a bit of sorting out Sally and I left for home and when I phoned Damian later he said that Ella had been bathed was sitting up for a while during the afternoon.
Sunday morning was another sleepy one, for both Ella and Daddy, but by the time Sally and I arrived back Ella had been sat out on the bed/settee and was now back in bed ! It’s a case of taking advantage of the moment just now!
While I was home I emptied a couple of the boxes…ready to refill with some of the treasures we have accumulated over the months, and which can’t move to the new hospital. We are getting there, honestly. Apparently we can take one box, which has to include EVERYTHING. Watch this space…..
We have had, in fact we are still having, a very nice visit from Kate and Steven. They came along this afternoon and have been having a good chat with Sally. They have all just popped out to the Restaurant for a break, so it gives me a bit of time to ‘blog’ before Corrie starts. They brought 2 gorgeous dresses for Ella and a DVD of her favourite programme…..’Wild at Heart’….guess what we’ll be watching tomorrow. Actually, as I speak, Ella has woken up for an ice pop….as you do…..and at last Kate and Steven have seen her awake. She has been her chatty self. Lovely!
I’ve made several trips over to the washing machine in the igloo, to retrieve one of our snuggglies which has been in there for at least 3 hrs. ( I think another washer has bitten the dust). Finally, I had to end the programme and lug it back dripping. It seemed the best plan to hang it over the shower rail to dry, but not before Kate and I had tried our best to squeeze it. It’s still there now….dripping in all it’s glory.
We have had a lovely evening with Ella. She has fed us fruit, chatted away, started a new word search ( she really is brilliant, even at hard ones) and enjoyed 3 stories from her Milly Molly Mandy story book! Not bad for someone who has snoozed all day?
We are going to finish now and say night night. As usual we send all our love and thanks, for your loving support and prayers.
Ella, Sally and Annette.xxx
PS Hi Sam and Grace....how did you get on for the first day back at school?
PPS Hi Uncle John....sorry we missed you.xx
PPS We'll try to put some photos on tomorrow if Sleeping Beauty wakes up in time. Mind you we'll need a handsome prince....any ideas?
Friday 5 June 2009
Day +120
Good morning all. Hope you all had a good day yesterday and that the weather was good to you in some way. I spent the afternoon in Southport…..with the boys in the garden…..and it was beautifully sunny and warm. When I hit the A580 on the way back to Manchester I was in a cloudburst, and we still are I might add. It’s now 8.30pm and the rain is bouncing down. We can’t get a signal on digital, so we are watching a snowy screen. At least the sound is still on.
Ella had a slow start today, still snoozing when I left about 10.30am and that is how she carried on until the afternoon. Then out of the blue I had a lovely phone call
‘Hello Nanna, what did you have for your dinner?’ etc etc
By the time I got back Ella was waiting for me to go the Restaurant for our ‘Friday fish’ so that she could feed Mummy and myself.
What else have we done tonight?
We have drawn a little, painted a little, chatted a little and watched 'snow' a little, and it’s just about time to settle down and sort out ready for bed. I think Sally and I need an early night, ha ha, and as Ella has started hers already, we may as well join her. We have got more sorting out tomorrow, so we need lots of energy!!!!
Night night and thank you for all your good wishes and prayers.
Ella, Sally and Annette.xxx
PS Hi David. Thankyou for your message. Ella sends her love and she loves the rosary. Thankyou. Take care.x
Good morning all. Hope you all had a good day yesterday and that the weather was good to you in some way. I spent the afternoon in Southport…..with the boys in the garden…..and it was beautifully sunny and warm. When I hit the A580 on the way back to Manchester I was in a cloudburst, and we still are I might add. It’s now 8.30pm and the rain is bouncing down. We can’t get a signal on digital, so we are watching a snowy screen. At least the sound is still on.
Ella had a slow start today, still snoozing when I left about 10.30am and that is how she carried on until the afternoon. Then out of the blue I had a lovely phone call
‘Hello Nanna, what did you have for your dinner?’ etc etc
By the time I got back Ella was waiting for me to go the Restaurant for our ‘Friday fish’ so that she could feed Mummy and myself.
What else have we done tonight?
We have drawn a little, painted a little, chatted a little and watched 'snow' a little, and it’s just about time to settle down and sort out ready for bed. I think Sally and I need an early night, ha ha, and as Ella has started hers already, we may as well join her. We have got more sorting out tomorrow, so we need lots of energy!!!!
Night night and thank you for all your good wishes and prayers.
Ella, Sally and Annette.xxx
PS Hi David. Thankyou for your message. Ella sends her love and she loves the rosary. Thankyou. Take care.x
Thursday 4 June 2009
Day +119
Hello to everyone. We hope you are cooling down nicely, but still enjoying the fine weather?
We have had a quiet day today….well Ella has. She has snoozed all day long and is fast asleep now. She did wake up when Reg and Mummy came back this tea time, in fact she even helped us to eat our tea. She is a real expert with a knife and fork now, and always manages to feed you the tastiest morsels….just big enough to get the flavour, yet small enough to fit in your mouth.
Rachael and I started the day with tea and toast, very nice, and then Rachael started to get organised for the trip home. I thought it was a good idea to carry on with downsizing in the cubicle, so we decided that Rachael should take the buggy home this time. After she had left I got on with sorting out some of the boxes. What a job! What should go? What should stay? But as I’ve mentioned before, we can take very little to the new hospital, so I had to be ruthless. Mind you, there were still 4 full boxes left, even after I’d put 3 by the door to take home, plus numerous bags and bits.
(As I am telling you this they are winging their way to Ainsdale on Sea, in the back of Reg’s car.)
The move for us is 2 weeks on Saturday….it will soon be here. The rest of the hospital is gearing up for the move too. There are many people emptying cupboards, lugging bin bags around, pushing beds from ward to ward and generally looking harassed. From what we can gather there will be teams of nurses to receive the children when they arrive and of course a skeleton staff here, to see them off! I think it will be all hands on deck that day!
Sally and I are just getting ourselves organised for the night, at the moment. Calendar Girls is on and I can feel a cup of tea coming on. We have got an early start tomorrow…I’m off back to Southport early to have the boys, whilst Rachael is at her sewing class, and Sally will be here solo. I’ll be back for the evening though.
Well, night night once again, and thank you for all your prayers and loving support.
Ella,Sally and Annette.xxx
PS The fudge cake sustained me all day Andrea!x
PPS Hi Sue. Glad you are enjoying your break, you’ve all earned it. Love to everyone at St John’s.
Hello to everyone. We hope you are cooling down nicely, but still enjoying the fine weather?
We have had a quiet day today….well Ella has. She has snoozed all day long and is fast asleep now. She did wake up when Reg and Mummy came back this tea time, in fact she even helped us to eat our tea. She is a real expert with a knife and fork now, and always manages to feed you the tastiest morsels….just big enough to get the flavour, yet small enough to fit in your mouth.
Rachael and I started the day with tea and toast, very nice, and then Rachael started to get organised for the trip home. I thought it was a good idea to carry on with downsizing in the cubicle, so we decided that Rachael should take the buggy home this time. After she had left I got on with sorting out some of the boxes. What a job! What should go? What should stay? But as I’ve mentioned before, we can take very little to the new hospital, so I had to be ruthless. Mind you, there were still 4 full boxes left, even after I’d put 3 by the door to take home, plus numerous bags and bits.
(As I am telling you this they are winging their way to Ainsdale on Sea, in the back of Reg’s car.)
The move for us is 2 weeks on Saturday….it will soon be here. The rest of the hospital is gearing up for the move too. There are many people emptying cupboards, lugging bin bags around, pushing beds from ward to ward and generally looking harassed. From what we can gather there will be teams of nurses to receive the children when they arrive and of course a skeleton staff here, to see them off! I think it will be all hands on deck that day!
Sally and I are just getting ourselves organised for the night, at the moment. Calendar Girls is on and I can feel a cup of tea coming on. We have got an early start tomorrow…I’m off back to Southport early to have the boys, whilst Rachael is at her sewing class, and Sally will be here solo. I’ll be back for the evening though.
Well, night night once again, and thank you for all your prayers and loving support.
Ella,Sally and Annette.xxx
PS The fudge cake sustained me all day Andrea!x
PPS Hi Sue. Glad you are enjoying your break, you’ve all earned it. Love to everyone at St John’s.
Wednesday 3 June 2009
Days +117,118
Hello again, after yet another 2 day break, but at least I have some good photos for you as well as all the news.
Tuesday morning brought a bright and early start as we knew that Ian and Pat were coming ….on a special mission…..to make ice cream with Ella. By 10.30 strawberries were being chopped, cream was chilled ….it was all very exciting. Not only that, Ann( Miss cookery) arrived, to make the long awaited quiche. I think the other families up here must have thought we had opened a café or something!
As you know Ella has been enjoying paddling in her blue bath, and it wasn’t long before it was out, and one or two grownups were invited to paddle too, while we waited for the quiche to cook. Guess who arrived just as the quiche and salad were ready to eat? Yes, Rachael and the 3 boys. It was pandemonium for a while, but it all settled down. While the boys played cars under the bed, Ella made them a sandwich and watched them play. Boys will be boys though, and I guess it was quite a relief all round when we left Ella in peace. ( I was bringing them back home to Rachael’s.)Ella insisted that she wanted to see us off ( probably to make sure they had actually gone). We all set off from the unit together, a long procession this time, but the boys suddenly set off running down the slope to the car park, with me in hot pursuit. I found them sat on the bench outside, by the door, waiting for us. Anyway Ella waved us off which was lovely.
I know she had a very comfortable night, in fact it was so comfortable she slept all morning and part of the afternoon today as well (Weds). At the moment she is having high amounts of pain relief, which are making her very sleepy.
I know the girls, and Ella when she was awake, really enjoyed their visit from Andrea and June today. I’m enjoying it now as well…..they left a gorgeously fattening fudge cake for us. VERY NAUGHTY!!!
This afternoon Sally came to relieve me at Rachael’s and we swopped over….Rachael and I are in charge tonight! We have had a really great evening…..painting water colours of Beatrix Potter prints….Ella’s idea and she actually joined in whole heartedly. Then we decided to watch a film, because Ella wasn’t tired at all at 9.30pm! We chose ‘Shirley Valentine’, thinking that it would just about be ok for Ella. It wasn’t!!! So we had to have a quick look for another, and decided on ‘Dirty Dancing’. Don’t worry though….by the time we had got it started Ella was nodding off the sleep!
She is fast asleep now, having half hourly obs done because she is having a transfusion over night. I don’t know, there are machines beeping everywhere, with nurses in here by the minute, it seems! Rachael is asleep in the cave( I hope) and she’ll take over in a few hours.
We’ll finish now and thank you for all your loving prayers and support.
Ella, Rachael and Annette.xxx
PS Hope you sorted out your patio table Janet! Still, the weather’s changing soon, if you want to look on the bright side?
PPS Hope you like the photos….Ella with Grandma and Grandad. What a place to park the chariot, eh? And on the table, in the other photo, is what is left of the quiche surrounded by the folk who enjoyed it!
Hello again, after yet another 2 day break, but at least I have some good photos for you as well as all the news.
Tuesday morning brought a bright and early start as we knew that Ian and Pat were coming ….on a special mission…..to make ice cream with Ella. By 10.30 strawberries were being chopped, cream was chilled ….it was all very exciting. Not only that, Ann( Miss cookery) arrived, to make the long awaited quiche. I think the other families up here must have thought we had opened a café or something!
As you know Ella has been enjoying paddling in her blue bath, and it wasn’t long before it was out, and one or two grownups were invited to paddle too, while we waited for the quiche to cook. Guess who arrived just as the quiche and salad were ready to eat? Yes, Rachael and the 3 boys. It was pandemonium for a while, but it all settled down. While the boys played cars under the bed, Ella made them a sandwich and watched them play. Boys will be boys though, and I guess it was quite a relief all round when we left Ella in peace. ( I was bringing them back home to Rachael’s.)Ella insisted that she wanted to see us off ( probably to make sure they had actually gone). We all set off from the unit together, a long procession this time, but the boys suddenly set off running down the slope to the car park, with me in hot pursuit. I found them sat on the bench outside, by the door, waiting for us. Anyway Ella waved us off which was lovely.
I know she had a very comfortable night, in fact it was so comfortable she slept all morning and part of the afternoon today as well (Weds). At the moment she is having high amounts of pain relief, which are making her very sleepy.
I know the girls, and Ella when she was awake, really enjoyed their visit from Andrea and June today. I’m enjoying it now as well…..they left a gorgeously fattening fudge cake for us. VERY NAUGHTY!!!
This afternoon Sally came to relieve me at Rachael’s and we swopped over….Rachael and I are in charge tonight! We have had a really great evening…..painting water colours of Beatrix Potter prints….Ella’s idea and she actually joined in whole heartedly. Then we decided to watch a film, because Ella wasn’t tired at all at 9.30pm! We chose ‘Shirley Valentine’, thinking that it would just about be ok for Ella. It wasn’t!!! So we had to have a quick look for another, and decided on ‘Dirty Dancing’. Don’t worry though….by the time we had got it started Ella was nodding off the sleep!
She is fast asleep now, having half hourly obs done because she is having a transfusion over night. I don’t know, there are machines beeping everywhere, with nurses in here by the minute, it seems! Rachael is asleep in the cave( I hope) and she’ll take over in a few hours.
We’ll finish now and thank you for all your loving prayers and support.
Ella, Rachael and Annette.xxx
PS Hope you sorted out your patio table Janet! Still, the weather’s changing soon, if you want to look on the bright side?
PPS Hope you like the photos….Ella with Grandma and Grandad. What a place to park the chariot, eh? And on the table, in the other photo, is what is left of the quiche surrounded by the folk who enjoyed it!
PPPS Hi to Simon, Collette and Daniel. Hope you are having a great holiday down there?
Monday 1 June 2009
Days +113,114,115,116
‘ White Rabbits’
Where can I possibly begin in order to catch up on the last few days? Before I try we hope you have all had a super duper weekend in this lovely sunshine? Manchester has had it’s fair share I can tell you….with roasting hot days and boiling hot nights ( in the cave).
I’ll briefly tell you our news, I think the blog would be pages and pages long if I tried to tell you everything.
Friday was spent quietly for Ella and I…….we watched DVD’s and coloured in pictures, but it was quite a lazy day really. Daddy came at tea time to stay for the night. We waited for a couple of hours to see if one of the surgical team would come, which they did…… but still no definite news.
Saturday saw Mummy and I taking over from Daddy, and again we had a quiet afternoon, with all three of us doing quite a lot of snoozing.On Sunday we were looking forwards to a visit from Grandma and Grandad so we needed to be up and ready, just in case they surprised us early. In fact Ella had the very good idea that she would like a bath. So, out came the ‘little blue bath’ and we discovered that Ella just fits into it, with no room to spare….not even a rubber duckling! She really enjoyed the getting wet all over feeling. Then, it was on with a pretty dress and off down the main corridor to buy some lunch for Mummy and I. It was quite a journey, Ella in her wheelchair with Sally pushing, and me man handling the drip stand. Anyway, we made it there and back safely, and then on to the bed/settee for a rest!
The morning Dr had suggested that Ella might enjoy the odd ice pop, or ice cube, so nurse Rachel went off to find one. She ended up having to find 4, because Ella didn’t like the taste of any of them, so I promised that I would go out to buy some later. I popped to the Co-op ( thank goodness for the Co op) and managed to get some mini ones, which seem to be a success.
We had a good time with Grandma and Grandad and we now have another furry friend….an Oran tan.(thanks Uncle Lee). When it was time for them to go, we had another procession to see them off….drips and all…and Ella was able to feel the hot sunshine on her legs. This must have got her thinking, because when we got back she had the idea of using the bath as a paddling pool! Why not???? It was soon filled up with really cool water to trickle over her legs and ankles……fantastic! We finished off a great day with a game ( well we set the board up) of junior scrabble. We decided it was too much like hard work and watched TV instead.
Today, Monday, has been a quiet day following an unsettled night. That doesn’t mean to that we didn’t enjoy another bath, another paddle and a visit from Reg. I fact we had 2 paddles, because Ella wanted to paddle again tonight, about 8.30pm. So out came the bath and towels again and we sat at’ the seaside’ sucking ice pops.
At the moment it is 11.00pm, Ella is asleep and Sally has gone to the cave for an early sleep.
We are going to say night night now and give you our usual thanks for all your prayers and support.
Ella,Sally and Annette.xxx
‘ White Rabbits’
Where can I possibly begin in order to catch up on the last few days? Before I try we hope you have all had a super duper weekend in this lovely sunshine? Manchester has had it’s fair share I can tell you….with roasting hot days and boiling hot nights ( in the cave).
I’ll briefly tell you our news, I think the blog would be pages and pages long if I tried to tell you everything.
Friday was spent quietly for Ella and I…….we watched DVD’s and coloured in pictures, but it was quite a lazy day really. Daddy came at tea time to stay for the night. We waited for a couple of hours to see if one of the surgical team would come, which they did…… but still no definite news.
Saturday saw Mummy and I taking over from Daddy, and again we had a quiet afternoon, with all three of us doing quite a lot of snoozing.On Sunday we were looking forwards to a visit from Grandma and Grandad so we needed to be up and ready, just in case they surprised us early. In fact Ella had the very good idea that she would like a bath. So, out came the ‘little blue bath’ and we discovered that Ella just fits into it, with no room to spare….not even a rubber duckling! She really enjoyed the getting wet all over feeling. Then, it was on with a pretty dress and off down the main corridor to buy some lunch for Mummy and I. It was quite a journey, Ella in her wheelchair with Sally pushing, and me man handling the drip stand. Anyway, we made it there and back safely, and then on to the bed/settee for a rest!
The morning Dr had suggested that Ella might enjoy the odd ice pop, or ice cube, so nurse Rachel went off to find one. She ended up having to find 4, because Ella didn’t like the taste of any of them, so I promised that I would go out to buy some later. I popped to the Co-op ( thank goodness for the Co op) and managed to get some mini ones, which seem to be a success.
We had a good time with Grandma and Grandad and we now have another furry friend….an Oran tan.(thanks Uncle Lee). When it was time for them to go, we had another procession to see them off….drips and all…and Ella was able to feel the hot sunshine on her legs. This must have got her thinking, because when we got back she had the idea of using the bath as a paddling pool! Why not???? It was soon filled up with really cool water to trickle over her legs and ankles……fantastic! We finished off a great day with a game ( well we set the board up) of junior scrabble. We decided it was too much like hard work and watched TV instead.
Today, Monday, has been a quiet day following an unsettled night. That doesn’t mean to that we didn’t enjoy another bath, another paddle and a visit from Reg. I fact we had 2 paddles, because Ella wanted to paddle again tonight, about 8.30pm. So out came the bath and towels again and we sat at’ the seaside’ sucking ice pops.
At the moment it is 11.00pm, Ella is asleep and Sally has gone to the cave for an early sleep.
We are going to say night night now and give you our usual thanks for all your prayers and support.
Ella,Sally and Annette.xxx
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