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
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