Day +12
The mornings are getting really light aren't they? When we first began on this venture it was pitch black as I came up onto the unit. Now it's quite light at 7.00am. Well here in Manchester it is...are we north of the equator here or something?
When I arrived today both Sally and Ella were fast asleep in Ella's bed, after what had turned out to be a very restless night, unfortunately, with Ella awake for much of it, but not knowing quite what was wrong. Anyway, we thought 'best foot forward' and we started off with tea and biscuits, which Ella really enjoyed.....eating one and half biscuits and sips of tea. The first proper, solid food she's tried by herself, for days and days. A good start we thought!
The rest of the day has been somewhat of a roller coaster, with highs and lows and nothing in between, I'm afraid. We have just let Ella dictate the pace according to how she has felt and how much energy she has wanted to put into things.
Showering was a disaster, but putting on her brand new pj's with matching head band, from Sallyanne, was a definite highlight. She looks gorgeous in them.
Once we were dressed and beds changed we pulled out the bed/settee from the wall and Ella had a chance to write on her white board."What shall we do Nanna?".........."How about counting up to 100?" What a perfect opportunity to do some Maths. We spent a lovely half hour, with Ella drawing out a 100 square and using it to answer questions. Then, all change as the white board was cleaned and a plan of a zoo drawn on it, complete with animals. I think Sally and I need to take a few drawing lessons though, particularly in the animal department.
Another down followed, as the orals arrived. Poor Ella is so sick, even at the thought of them.
Mr Wynn is back from his travels to meetings in America, and he soon hot footed it in to see all his patients. He came in with his team, being mostly concerned about the fact Ella had needed oxygen again in the night. That sorted, he said how delighted he is with Ella's cell growth and how well she is doing.
There have been more 'goings on' with Ella, which show that the donor cells are active. Soreness in her joints and back, and also GVHD, which means that the donor cells are thinking " Where am I?" and making a fuss about it. The treatment is the same..........anti rejection drugs, pain killers, rest and lots of cuddles. Not necessarily in that order.
A sleep followed during the afternoon, with Ella and Mum both snoozing for a while. This did perk Ella up a little and whilst Sally slept on, she and I got her colouring entry for Radio Lollipop ready. Of course Mr Wynn reappeared whilst this was going on, Ella silently concentrating on her colouring, and Sally looking as if she had been in a wind tunnel. He checked Ella's breathing and rash over again, and is pleased with her. They really do take great care of their little ones up here.
So, here we are again tonight. Ella asleep on the bed/settee, Sally still sewing and me ' you know whatting'.
Some exciting news from Sally. She won a box of Belgian chocolates in the hospital tombola, to raise money for a new heart scanner. Well actually she won three prizes..........but two of them were teddies and we can't bring soft toys onto the unit. Sally gave the chocolates to Ella thinking they might tempt her, and Ella passed them onto me thinking they would tempt me and I did the same back to Sally. We'll try again tomorrow.
One bright spot from today. 'Mrs Doubtfire' has gone on holiday, and may be away for a couple of days.
Lots of love to everyone.Night night.
Ella, Sally and Annette.xxx