Day +84
Hi, and welcome back to us. I’m actually sat here at the beginning of day +85. It’s 4.30am and I’ve just taken over from Sally. We just ran out of steam last night to write the blog, so I’m on catch up.
Back to Thursday…..Ella had had a good night, so the usual pattern emerged…..more energy and enthusiasm. That is except for having a wash and brush up. We did agree on a mini wash, in honour of Janet’s arrival at 10.00am, in fact she arrived in the middle of it. Ella by now had her grumpy head on, but we persisted and she managed half an hour of ‘prefixes’, but the x tables were a non- starter!
All of the rest of the morning centred around planning menus, with Ella willing to try anything( except cakes ). We decided on wraps for lunch and lasagne for tea, so off I went to the Co-op to find everything.
Somehow we got through the rest of the day without too much falling out. Talk about too many cooks! Ella was very anxious that not only did she prepare everything, that she also fed us the results. It was all delicious…if not a little filling. Ella had already asked sister Trisha if she would like some lasagne, and that extended to almost all the nurses….including night staff….We had what seemed a lifetime to wait whilst it cooked, with Ella clock watching, until eventually she could stand it no longer. Sally had gone to check on it, and Ella was up off the bed ( lines and all ) and trotted off to the kitchen to see for herself. We were all amazed and delighted at her determination, talk about ‘Miss Bossy Boots’. I wander if she will manage to walk as far today!
We didn’t see Dr Wynn, although he was around. There were no major concerns…. Her lines still wouldn’t bleed back, so Sven had another go, under the watchful eye of Claire….men eh! ( They still didn’t work ).The IV team came in the end.
We already knew that Ella was going to have her ‘scope today ( Friday) so we have got another day of waiting. She is on the afternoon list, and hopefully they won’t leave her all day. At least we’re not going to Booth Hall again.
Well it is almost fully light now and I’ve just time to tell you about our latest project. Ella’s class at school are looking at the Egyptians right now, so of course we thought that Ella would like to join in with that, too. Hence, we have now got a super Egyptian goddess on our white board ( thanks to Mummy..excuse the pun). It was quite funny really! We needed some coloured white board markers, but we only had black and blue. However, when we had Ella out for a short walk yesterday Sally spotted some markers outside one of the clinics…..which she ‘borrowed’ (when clinic had finished) to colour our goddess in with…..and very lovely she is too! I’ll try to include her in a few photos later.
I’ll finish now and give Ella a tummy rub. She has had a lot of treatments through her lines overnight, some usual ones of course, but they have included longer ones which have needed ‘obs’ every 20mins. She’s got a blood transfusion going through now. Even though we have all got used to the beeping machines now, it does disturb Ella’s sleep when she has to have her BP taken all the time etc.
Sally has told Ella and I that she is definitely going to start the dance DVD today……..ummm……
Lots of love to everyone, and our usual thanks for all your support and prayers.
Ella, Sally and Annette.xxx
PS just a reminder of Simon's web page....
Hi, and welcome back to us. I’m actually sat here at the beginning of day +85. It’s 4.30am and I’ve just taken over from Sally. We just ran out of steam last night to write the blog, so I’m on catch up.
Back to Thursday…..Ella had had a good night, so the usual pattern emerged…..more energy and enthusiasm. That is except for having a wash and brush up. We did agree on a mini wash, in honour of Janet’s arrival at 10.00am, in fact she arrived in the middle of it. Ella by now had her grumpy head on, but we persisted and she managed half an hour of ‘prefixes’, but the x tables were a non- starter!
All of the rest of the morning centred around planning menus, with Ella willing to try anything( except cakes ). We decided on wraps for lunch and lasagne for tea, so off I went to the Co-op to find everything.
Somehow we got through the rest of the day without too much falling out. Talk about too many cooks! Ella was very anxious that not only did she prepare everything, that she also fed us the results. It was all delicious…if not a little filling. Ella had already asked sister Trisha if she would like some lasagne, and that extended to almost all the nurses….including night staff….We had what seemed a lifetime to wait whilst it cooked, with Ella clock watching, until eventually she could stand it no longer. Sally had gone to check on it, and Ella was up off the bed ( lines and all ) and trotted off to the kitchen to see for herself. We were all amazed and delighted at her determination, talk about ‘Miss Bossy Boots’. I wander if she will manage to walk as far today!
We didn’t see Dr Wynn, although he was around. There were no major concerns…. Her lines still wouldn’t bleed back, so Sven had another go, under the watchful eye of Claire….men eh! ( They still didn’t work ).The IV team came in the end.
We already knew that Ella was going to have her ‘scope today ( Friday) so we have got another day of waiting. She is on the afternoon list, and hopefully they won’t leave her all day. At least we’re not going to Booth Hall again.
Well it is almost fully light now and I’ve just time to tell you about our latest project. Ella’s class at school are looking at the Egyptians right now, so of course we thought that Ella would like to join in with that, too. Hence, we have now got a super Egyptian goddess on our white board ( thanks to Mummy..excuse the pun). It was quite funny really! We needed some coloured white board markers, but we only had black and blue. However, when we had Ella out for a short walk yesterday Sally spotted some markers outside one of the clinics…..which she ‘borrowed’ (when clinic had finished) to colour our goddess in with…..and very lovely she is too! I’ll try to include her in a few photos later.
I’ll finish now and give Ella a tummy rub. She has had a lot of treatments through her lines overnight, some usual ones of course, but they have included longer ones which have needed ‘obs’ every 20mins. She’s got a blood transfusion going through now. Even though we have all got used to the beeping machines now, it does disturb Ella’s sleep when she has to have her BP taken all the time etc.
Sally has told Ella and I that she is definitely going to start the dance DVD today……..ummm……
Lots of love to everyone, and our usual thanks for all your support and prayers.
Ella, Sally and Annette.xxx
PS just a reminder of Simon's web page....
Good morning Ella,Wow what a great bandanna you look gorgeous as usual.it was fab to see you dressed ready for your trip out in the car, you put every adult I know to shame with your strength & determination you truly are a very special little princess. the sun is already shining here but I'm not holding my breath that it will now be here for the weekend, my friends are coming to stay to play & we're going girlie shopping in liverpool tomorrow.....Hurray!!! so if we see anything that looks like its got ella written all over it you can rest assured it will wing its way to you. The boy's are going to look at war ships...Yawn Yawn how boring but after they have done all the boy stuff we're going to the american diner for huge hamburgers & milkshakes made with ice cream, all very slimming & within my restricted foods NOT!!!!! its worth the pain & itching now & again. I'm just looking out of the window & Loulou Bunny is getting ready for a stroll around her domain, she hasn't been very well for a few days I noticed she couldn't put her bottom down & when I checked she was really sore so I gave her a warm bath & cuddled her in a huge soft towel untill she was dry, so hopefully today she's feeling better. I'll soon know if she starts her excavation project which has been neglected for a few days. Well thats all from the Johnsons for the time being. Hoping you have a really good weekend & even manage another trip out shopping. Sending you huge rainbow wishes & tons of fairy kisses Sallyanne, Nick & Loulou Bunny X X X X X
ReplyDeleteits so lovley to see your lovley smile with all that nice food. Each time we see your picture you look better and better keep it uplots of lovexx
ReplyDeleteHi Ella,
ReplyDeleteLove the photos, you look really well and happy. I hear you've been doing lots of cooking, wish I was there when you cooked the lasagne, thats my favourite! Where you able to have some and was it yummy?? Its great to see you looking so well. Hope you have a lovely weekend, its a long one for us... no school til Tuesday!
Lots of love and kisses
Jane Tom and Sean xxxx