Days +129,130,131
Hello from us all back in Manchester, with a newly spruced up computer in use.( it has been back to Southport for it’s wash and brush up, sorry about the missing days). The weather here today has been awful, lots and lots of rain, but now it’s early evening and the sun has been cracking the flags. I need to tell you how Ella is getting along first though.
We have been through a lot of ups and downs over the last few days. The major concerns have been pain relief, which still isn’t spot on yet at times, and then also Ella’s lines, which haven’t been working again! This has all meant Dr’s visits in the night, bloods taken from her arms and hands instead of the lines, until finally she went down to theatre today to have a new line. This one is working beautifully and at last we can catch up with treatments she fell behind with. ( 3rd time lucky)
There has been a lot of discussion about the next steps in sorting out Ella’s tummy and it has been decided to transfer us to Birmingham, where there is a specialist unit. We have a provisional date for early July, although Dr Wynn has said that we may be on 24hrs notice if a vacancy occurs at the other end. There will be quite a lot of ‘sorting’ to do to get us there as well, because Ella will need a nurse, and probably a Dr, to travel down with her.
In the meantime, we have been really busy getting ourselves organised for the big move on Saturday. The cubicle has been nearly stripped of all our treasures, although the minute we think we are on top of it some one else arrives with another treat for the Princess, which is only right and proper, of course. Daddy came today, Wednesday, and it gave me and Sally some time to sort the cave, together. Sally must have every item of clothing she possesses here, and I’m not far behind. We were trying to fit it all into a small holdall…..which didn’t work…..so we compromised on Sally’s largest suitcase between us!!! All the extras like shoes, hair dryer, books, towels, snugglies, makeup…..will all have to live in the car, wherever we end up. The accommodation at the new hospital is a pull down bed for the bedside person and then sharing a 3 bed room with 2 other ladies ( with NO storage to speak of). We have absolutely no idea about Birmingham yet. Jo, the co-ordinator, is trying to find out for us…she thinks there may be a Ronald McDonald house there! I’m sure we will be well cared for.
There have been many highs this week, including watching Ann making the promised penguins…lovely, a visit from Reg….who came bearing more Sylvanians and then a Chinese takeaway with Ian ( picnic style ), which Sally laid out on Ella’s bed so she could see what we were eating and choose what we had next.
Oh, I nearly forgot to tell you. Ella’s wobbly tooth came out in theatre today, ssooooooooooo the fairies will be coming tonight! They will have to collect it from the theatre, because it’s not allowed back up here, but we have got a special tooth fairy pouch from the Dr to put under Ella’s pillow tonight. How about that then?
Ella is such a brave little person….she has been through so many trials, especially over the last few weeks, she is an inspiration!
I’m going to finish now….it’s actually 4.30am on Thursday morning ( I ran out of steam last night). The fairies HAVE been, although Ella doesn’t know yet. Nurse Niki thought she heard some fluttering about 3.00am!! She wasn’t sure if it was a fairy or Sally.
Bye for now and we’ll try and catch up again tonight to get us back on track.
Lots of love to everyone and as usual our thanks for your loving concern and prayers, which are very important to us.
Ella, Sally and Annette.xxx
PS Hi Janet, hope all is well with you. Sorry we didn’t get to see you before we moved.x
PPS. Hello to everyone at St John’s…..wish you well for the Ofsted.