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
Wednesday 30 September 2009
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.
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