Day +191 (Sat16th)
Good morning and hello from us here in Manchester. It’s around 6.00am and I am writing from our room. I’ve just got here after a night in the dormitory and both Sally and Ella are sound asleep. The night staff have just assured me that they have both had a restful night.
We have come to the end of an eventful week, as you may have guessed by the lack of letters to you. It has been full of ups and downs, but looking back now it has passed very quickly thank goodness, and we are on the way back up. I think we left you with Ella due to go down to theatre? Well that didn’t happen again, because there was a delay in the theatre and they ran out of time. Just as we found out that news we had an emergency in here, when Ella had a seizure. It was very frightening at the time, as the crash team rushed in and took over. Within an hour Ella had been down for a brain scan, Daddy and Auntie Rachael were here and Dr Wynn had come in from home. A further scan, the following morning as well, showed that more than likely Ella had showed a reaction to one of the drugs she has been on since her transplant, and the immediate treatment has been to stop it.
Ella has recovered well from that night. Her eyesight was affected to begin with and she was disorientated, but as the days have gone on she has made a very good recovery and yesterday was our best day for quite a while. We had a visit from Linda, who works with the Rainbow Trust. She came to introduce herself to Ella and us and she stayed for an hour, painting a fan with Ella. Linda will be coming each week now, to add support for Ella, Sam and the whole family…..playing with Ella ( and Sam if he is here) , giving the family ‘time off’ , in fact helping in any way she can. If we lived in this area she would be visiting at home too, but we are out of the area unfortunately. However, the Trust does have a super holiday home, in Northumberland, which we can all go to when Ella comes home. Linda’s visit was topped off with a visit from Kate, who worked on the computer with Ella, designing clothes. It was quite a turn around from three days earlier, with Ella sat up and joining in. We finished the afternoon off with physio!!!! It was a short trip out in the chariot, over the bridge and back, followed by a ‘sit out’ in the big chair. ( I was left behind to remake the bed….but I got these snaps as they went along the walkway facing Ella’s room. You can’t see her very well I’m afraid, but she is in there!!!)
Auntie Margaret is home from Spain, and is staying with Sally for a few days. She and Reg came to see Ella a couple of days ago and she brought some decorated letters spelling ELLABELLA which are now stuck on the door!!! The fan is on the bathroom door and we have got a few ‘adornments’ around the room. It’s beginning to look more child friendly in here…but still no telly. We are relying on DVD’s ,but even they seem to be ‘coming round’ more quickly now, so much so that Mrs Doubtfire is back, after her world cruise!!
Today Daddy is taking over for the night, so Sally and I are coming home …..to do our washing! So watch out Southport….the Eatons are in town!!!
We’ll say bye for now. The pair of them are awake and it’s time to get ‘the show on the road’ once more.
We send you all lots of love and thanks, for your loving prayers and support.
Ella, Sally and Annette.xxx
Good morning and hello from us here in Manchester. It’s around 6.00am and I am writing from our room. I’ve just got here after a night in the dormitory and both Sally and Ella are sound asleep. The night staff have just assured me that they have both had a restful night.
We have come to the end of an eventful week, as you may have guessed by the lack of letters to you. It has been full of ups and downs, but looking back now it has passed very quickly thank goodness, and we are on the way back up. I think we left you with Ella due to go down to theatre? Well that didn’t happen again, because there was a delay in the theatre and they ran out of time. Just as we found out that news we had an emergency in here, when Ella had a seizure. It was very frightening at the time, as the crash team rushed in and took over. Within an hour Ella had been down for a brain scan, Daddy and Auntie Rachael were here and Dr Wynn had come in from home. A further scan, the following morning as well, showed that more than likely Ella had showed a reaction to one of the drugs she has been on since her transplant, and the immediate treatment has been to stop it.
Ella has recovered well from that night. Her eyesight was affected to begin with and she was disorientated, but as the days have gone on she has made a very good recovery and yesterday was our best day for quite a while. We had a visit from Linda, who works with the Rainbow Trust. She came to introduce herself to Ella and us and she stayed for an hour, painting a fan with Ella. Linda will be coming each week now, to add support for Ella, Sam and the whole family…..playing with Ella ( and Sam if he is here) , giving the family ‘time off’ , in fact helping in any way she can. If we lived in this area she would be visiting at home too, but we are out of the area unfortunately. However, the Trust does have a super holiday home, in Northumberland, which we can all go to when Ella comes home. Linda’s visit was topped off with a visit from Kate, who worked on the computer with Ella, designing clothes. It was quite a turn around from three days earlier, with Ella sat up and joining in. We finished the afternoon off with physio!!!! It was a short trip out in the chariot, over the bridge and back, followed by a ‘sit out’ in the big chair. ( I was left behind to remake the bed….but I got these snaps as they went along the walkway facing Ella’s room. You can’t see her very well I’m afraid, but she is in there!!!)
Auntie Margaret is home from Spain, and is staying with Sally for a few days. She and Reg came to see Ella a couple of days ago and she brought some decorated letters spelling ELLABELLA which are now stuck on the door!!! The fan is on the bathroom door and we have got a few ‘adornments’ around the room. It’s beginning to look more child friendly in here…but still no telly. We are relying on DVD’s ,but even they seem to be ‘coming round’ more quickly now, so much so that Mrs Doubtfire is back, after her world cruise!!
Today Daddy is taking over for the night, so Sally and I are coming home …..to do our washing! So watch out Southport….the Eatons are in town!!!
We’ll say bye for now. The pair of them are awake and it’s time to get ‘the show on the road’ once more.
We send you all lots of love and thanks, for your loving prayers and support.
Ella, Sally and Annette.xxx
PS Who thinks the hospital looks like a prison? be honest now!!!!
Hi Ella, Sally, Annette & Rachel
ReplyDeleteHope you are all well, sorry to read about your seizure Ella, it must have been very scary for your family to see you like that.
I remember when my son had a febrile convulsion when he was 3, it really scared me. So glad your recovering.
Glad your getting out of your room Ella, though I do agree with you Sally, it does look very much like a prison.
Not in a bad way but im glad im not working there, looks like tooooo much walking for me, i'd be so exhausted.
I'm glad Linda is visiting you, she is such a lovely lady, I remember her from the old RMCH.
Kate is a new name, who is she?
Have to go now
Take care!
Lots of loves & hugs to you all
Janet XXXXXXXXXXXXXXXXXXXXXXXXX
Hi Guys, gald to hear your felling better after your seizure, that must have been very frightening to put it mildly. Here's praying for no reruns.
ReplyDeleteThe photo's remind me of a Hotel I stayed in at the Grand Canyon years ago, I stay in all the best places, now you mention it I did get stopped for speeding just before we got there and the Police Officer told us where it was!
Heres praying for a less stressful week for all. Keep shining Ella Love to you all the Waites
yey!!!! we finally have a working computer and internet.It's only been nearly a year! i'm glad to hear that Ella is feeling a little better after a difficult week.we went to Blackpool zoo last week with The Waites and had a lovely day.we saw the lion cubs and learned that 2 of the Giraffes are expecting.We will all have to go and see them when Ella is home.
ReplyDeleteGrace sends her love.we now promise more regular contact and if possible we would like to come and visit on Wednesday.We will be getting the train this time though! i will speak to you before then.
love hugs and kisses from all of us to all of you.God bless. Sam and Grace