Days +140,141,142 (Sat.Sun.Mon.)
We haven’t forgotten you all….hope you haven’t given up on us? The problem is the dongle!!! We can’t get a connection, so we have been out of contact all over the weekend. At first I thought it was us, but I have been to the ‘dongle shop’ today and the ‘dongle man’ assures me that everyone has been having network problems and it should be ok by tomorrow, Tuesday. Anyway, I’ll keep on writing and when these epistles eventually hit the waves you’ll all have to sit down with a cuppa to catch up.
We had our change over day on Saturday in every sense of the word! We moved into our new room and Daddy came to stay for the night, so we had a change over in that way too.
Firstly the room….it is very nice and light, with a floor length window to look out of, as I have told you. We have managed to fill it already. Over the weekend it was full of people, let alone ‘stuff’. But you know us girls, we don’t travel light. Daddy arrivd in time to do some of the lugging about and Sam joined in too, and by lunch time we were in. Reg then arrived with the chariot and drawers! The chair is in the bathroom and the drawers just about fit in along one wall.
Saturday night Ella was solo with Daddy….I know they had an ‘interesting’ night and when we arrived here on Sunday morning for breakfast he was ready for a shower and a break. Our Saturday night was interesting too….after our romantic dinner for four, Reg and I had a drink in the bar, where we got tangled up with a wedding party, and then in the middle of the night the fire alarms went off. Fortunately we weren’t evacuated…
Sunday saw us going off for the afternoon to the Sea Life centre with Sam. Little Ella looked after Daddy here, but she was settled enough and had lots of treats when we got back. Birmingham is proving to be a really interesting place to visit…with lots of centres of interest, not to mention the shopping. Daddy and Reg left on Sunday teatime and Rachael and Ian arrived. Auntie Rachael did the honours Sunday night….again it was interesting….but not as much as Sally,Sam and Ian’s was. The fire alarm went off in the hotel for real this time….the FB arrived in full force and everyone had to wait outside until it was cleared. Someone had been smoking of course…it really isn’t on, especially when little ones are outside in their pj’s until all hours.
We can beat that today though….we have had the FB up here on the unit. One of the builders cut through a wire and set the alarm off for the hospital. At the same time Rachael had gone down to the restaurant to get us some lunch and was frantically phoning me to see if we had been evacuated. I don’t know…what is it about us and the FB?
We have got lots of family birthdays coming up next month and I needed to get Sophie a card, as hers is on the 1st. Rachael did the honours whilst I went to find a card shop. Where did I end up? The Bull Ring, and in the heat of today as well. It’s very impressive around there, but it was incredibly hot. When I got back Ella and Rachael were melting too….not to mention all the staff. Fans were fanning, windows were wide open and all the children were soooooooooo hot. You can imagine lying in bed in that heat?
On the whole Ella is a little better than when we arrived. The pain control seems to working more smoothly, and she is enjoying her little tastes of food. It’s just difficult to keep a rein on the drinks, especially when it’s hot like this. The gastro Drs are looking to do more tests this week…a barium meal and an MRI scan….. In the meantime the transplant team are checking up on her daily to make sure that all her usual treatments are carrying on as usual. Not to mention our Manchester team, who are checking in every day as well.
We have had a very quiet day today. Kirsty, Ella’s teacher came early and they finished off a butterfly started last week, and from then Ella has just snoozed. Nurse Sam has been in charge today. She is lovely and very experienced. She has tried to get Ella motivated too, but to no avail. It has just been too hot. Anyway, there was a spark of interest when Sam said that Ella would have to get out of bed tomorrow….for a little sit out…and if she is not in charge of the ward tomorrow she may have time to take Ella for a little walk, to see the garden. It is all good motivation, which is what Ella needs right now.
I’m going to finish for tonight. It’s midnight on Monday and I’ll try to get this posted tomorrow. As of this moment there still isn’t a connection.
Night night with lots of love and thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx