Day +39 and +40
Hi everyone. Well, those naughty girls didn’t keep up the blog last night did they? When I left for home yesterday, Rachael promised to write all the news, but when I texted later on in the evening she said they were too busy. My mind was working overtime …….what had gone wrong? I asked what they were doing….eating…... Oh well I suppose that does keep you busy, especially if it’s from one of Auntie Dianne’s food parcels.
Day 39 was a mixture of pleasure and pain. Ella had slow start to the day, with tummy ache being the main morning feature, although Dr Wynn was pleased with her again and said she could carry on with her little nibbles. She was very tired, but just couldn’t get off to sleep, to catch up. Then it was discovered that her line wasn’t bleeding back, so she had to have some special “stuff” in it to “unstuff” it. That made her medicines late etc etc. After much ‘Ellalollying’ we got to dinner time and she had a little snooze.
One of the play leaders, Anne, had promised to make biscuits in the afternoon, and eventually we managed to get Ella out of bed and across to the bed/settee so that she could join in. Anne is very organised and methodical, of the ‘old school’ I would say. Ella loved the ritual hand washing, crumbing the dough, dividing exactly into equal pieces…eventually producing eight cookies Mrs Maryland would be proud of!
I wasn’t here, but I know that later Ella had a little excursion ‘down the slope’ to the open door. “ I can smell grass”…….they had been cutting it outside the unit.
The day ended here with all the girls asleep early, and back in Southport with all the boys (and Sophie) asleep early too. I had gone down ( with Reg ) to give John a hand, sorting the boys out with tea and bedtime routine. They were sooooooo good and fast asleep by 7.30. John is a star!
Day 40 began for me down at Rachael’s at 6.30am, getting them all up again, ready for school, and after phoning Rachael later on I heard that Rachael had caught up with her sleep in the igloo and Ella and Mummy had had a reasonable night too.
Dr Wynn was again pleased with Ella, her blood results are very good. It’s just the tummy thing! The new stem cells are being repeated again on Friday. The pain team are cutting back very slowly on the morphine, from 5.00 to 4.8 today. If they go too quickly Ella will go ‘cold turkey’. The future plan is to keep up with the paracetemol regularly, give oral morphine if needed and to maybe increase the strength of the lollies.
Ella was on the bed/settee when I arrived back this afternoon and we had a new piece of furniture……..a reclining chair! After seven and a half weeks we have an arm chair for beside the bed. I can’t recline it of course……..there’s no room……..but at least we don’t have to droop over the bedside during the night now. It’s heaven.
Ella had visit from the physio this afternoon, too. We have been concerned about Ella’s mobility, or lack of it, over these last few weeks in bed. She isn’t standing or walking without support. So, tomorrow the physios are coming back with a frame, so that Ella will be able to stand with it’s support, and that will lead on to walking with it. More steps forward……….literally.
As I am writing the blog tonight, Sally is fast asleep and Ella is too. Ella is so tired, but she finds it very difficult to relax completely. Lizzie is in bed with her, definitely looking as if she has 'had a bad hair day' , but at least she is doing the trick and tickles ears perfectly. ( new bloggers need to look back a few days to find out who Lizzie is ). Hopefully she’ll get a good couple of hours now, whilst it’s quiet.
It’s great to read all your messages and to keep in touch. We read them to Ella and she likes to hear them. Hopefully she’ll be back in full swing soon, to write a bit herself. I think it’s a concentration problem at the moment.
Hope you're feeling better Janet, we miss you.xx
Hope all went well on Monday at St John’s, for your inspection. I’m sure it did! Special love to 6N/E and Mrs Newton, I think about you all lots and lots. Our new school sounds great!
I’m going to finish now and get this posted off. I’m sure there is lots I missed out, but I’ll catch up tomorrow.
Night night and lots of love, from
Ella, Sally and Annette. xxx