Day +42
Good morning to everyone from sunny, warm Manchester, and what a lovely morning it was too.
I got up onto the unit about 5.00am and found out straight away that Ella had slept well. There had been ‘episodes’ but she had gone straight back to sleep afterwards. Great stuff. This led to her asking for breakfast about 7.00am, so with that I went to make us tea and toast. When I got back Ella decided that she wanted to move onto the bed/settee, and hardly had we unplugged her bleepers, she was off…..with the walking frame! She really enjoyed her ‘taste’ of toast and we seemed to be all set for an early start to the day.
Before we knew it, the physios had arrived. I think they wanted to catch her at her best and it worked. She performed beautifully. Bending her legs, stretching arms etc and all without the aid of a safety net! BUT then came the most exciting part. She was invited to go for a little stroll onto the unit. Should she use the handbag frame or not? Ella had no hesitation in her choice…without. So off we went! Those little legs were like Bambi’s to begin with, but she soon got the hang of it and slowly we made it to the nurses’ station and back. Sadly all the girls were busy in the cubicles and missed our moment, but there’s always tomorrow.
We just got back and in the a member of the teaching team. They have had a lot of illness so I think supply staff are covering. Not much work done today, but at least it was a catch up time to see where Ella got up to with Janet.
We had a bit of a ‘cafuffle’ this morning because we didn’t have the rice milk to give Ella with her rice crispies. Eventually it was decided to send some over from Booth Hall. It arrived about 10.30am and Ella had a quick bowl to try it out.ummmm….maybe we’ll have to use the persuasion fairy on this one. I had a trip the Co-op to get some of the other items on her diet list, and a quick call to Simon meant that we had non- dairy margarine as well. (thanks Simon ). Ella had decided to try mashed potato and carrots from the hospital kitchen for lunch. Big mistake! I have to confess that some of the food is delicious, but this was horrible. So we quickly boiled our own, mashed them with the new marg. and bingo, she tried a little and enjoyed what she had.
Sally and I had a chat with the dietician later, whilst Ella was asleep, and we came up with a few ideas. The diet is very basic at the moment, but other non dairy, gluten free and more fibrous food could be added in later. SO that left us with the question of tea and what was Nanna going to make? How do you disguise mashed potato yet again? In a potato cake of course! It’s yummy with boiled rice and fish isn’t it? Ella enjoyed that too, bless her. She fell asleep in the middle of it, and even finished it off cold later.
Ella has had a quiet afternoon. She definitely ‘peaked’ early today. At the moment she is coming to the end of a blood transfusion ( it’s 9.30pm ) so we should see those roses back in her cheeks tomorrow, and a spring in her step again.
Dr Wynn came at lunch time and gave Ella a quick look over. He is pleased with her progress, but realises that we still have a long way to go. He is anxious that Ella needs to get off the lines as soon as possible, in order that she can go off the unit and get a bit of fresh air. We are working on it…….the morphine is down to 2.00 today. Once that line is down we will be more mobile.
We are stock piling crafts here….production is more or less at a standstill. I think these long nights are taking their toll. Maybe we should become nocturnal.
The weather here has been lovely today, warm and sunny. Lots of families were sat out by the bird house eating their picnics, ( it sounds like Botanic Park doesn’t it ? )can’t wait for us to be able to join them.
Anyway, we are tired tonight. I think an early night is in order. Ella is fast asleep right now and I don’t think we will be long in following her. Hope you like the photos of Ella’s trip out with the physios. Cool pj’s Sally Anne!
Night night to everyone, and thank you for all your good wishes and prayers.
Ella, Sally and Annette. xxx
Good morning to everyone from sunny, warm Manchester, and what a lovely morning it was too.
I got up onto the unit about 5.00am and found out straight away that Ella had slept well. There had been ‘episodes’ but she had gone straight back to sleep afterwards. Great stuff. This led to her asking for breakfast about 7.00am, so with that I went to make us tea and toast. When I got back Ella decided that she wanted to move onto the bed/settee, and hardly had we unplugged her bleepers, she was off…..with the walking frame! She really enjoyed her ‘taste’ of toast and we seemed to be all set for an early start to the day.
Before we knew it, the physios had arrived. I think they wanted to catch her at her best and it worked. She performed beautifully. Bending her legs, stretching arms etc and all without the aid of a safety net! BUT then came the most exciting part. She was invited to go for a little stroll onto the unit. Should she use the handbag frame or not? Ella had no hesitation in her choice…without. So off we went! Those little legs were like Bambi’s to begin with, but she soon got the hang of it and slowly we made it to the nurses’ station and back. Sadly all the girls were busy in the cubicles and missed our moment, but there’s always tomorrow.
We just got back and in the a member of the teaching team. They have had a lot of illness so I think supply staff are covering. Not much work done today, but at least it was a catch up time to see where Ella got up to with Janet.
We had a bit of a ‘cafuffle’ this morning because we didn’t have the rice milk to give Ella with her rice crispies. Eventually it was decided to send some over from Booth Hall. It arrived about 10.30am and Ella had a quick bowl to try it out.ummmm….maybe we’ll have to use the persuasion fairy on this one. I had a trip the Co-op to get some of the other items on her diet list, and a quick call to Simon meant that we had non- dairy margarine as well. (thanks Simon ). Ella had decided to try mashed potato and carrots from the hospital kitchen for lunch. Big mistake! I have to confess that some of the food is delicious, but this was horrible. So we quickly boiled our own, mashed them with the new marg. and bingo, she tried a little and enjoyed what she had.
Sally and I had a chat with the dietician later, whilst Ella was asleep, and we came up with a few ideas. The diet is very basic at the moment, but other non dairy, gluten free and more fibrous food could be added in later. SO that left us with the question of tea and what was Nanna going to make? How do you disguise mashed potato yet again? In a potato cake of course! It’s yummy with boiled rice and fish isn’t it? Ella enjoyed that too, bless her. She fell asleep in the middle of it, and even finished it off cold later.
Ella has had a quiet afternoon. She definitely ‘peaked’ early today. At the moment she is coming to the end of a blood transfusion ( it’s 9.30pm ) so we should see those roses back in her cheeks tomorrow, and a spring in her step again.
Dr Wynn came at lunch time and gave Ella a quick look over. He is pleased with her progress, but realises that we still have a long way to go. He is anxious that Ella needs to get off the lines as soon as possible, in order that she can go off the unit and get a bit of fresh air. We are working on it…….the morphine is down to 2.00 today. Once that line is down we will be more mobile.
We are stock piling crafts here….production is more or less at a standstill. I think these long nights are taking their toll. Maybe we should become nocturnal.
The weather here has been lovely today, warm and sunny. Lots of families were sat out by the bird house eating their picnics, ( it sounds like Botanic Park doesn’t it ? )can’t wait for us to be able to join them.
Anyway, we are tired tonight. I think an early night is in order. Ella is fast asleep right now and I don’t think we will be long in following her. Hope you like the photos of Ella’s trip out with the physios. Cool pj’s Sally Anne!
Night night to everyone, and thank you for all your good wishes and prayers.
Ella, Sally and Annette. xxx
so lovley to see you up and about with those physios they are wonderful people!.its nice and sunny here in wigan too which dosnt happen very often. Sounds like your mummy and nanna are doing a fantastic job looking after you , our love to you all
ReplyDeletelindsay simon alex josh n cory xxxx
Good morning ella, Wow, WOW you clever girl you look so cool, & walking with only the merest help. Ella Bella you put most adults to shame with your determination & those smiles of yours, just heart melting. You may have noticed a new name on your followers list, her name is donna, she is the kind lady whoi bought the new fabric for your next supply of pj@s but she said that because your such a special little girl she is sending over some little presents for you. I can't wait for them to arrive & if the weather is ok next weekend we'll come over on nick's scooter to bring everything to you in person. Also I gave Ian your hair tickles yesterday so you should have them soon, thats if he has any energy left, he & bumpy spent what looks like all yesterday cutting back trees & bushes so now your garden is HUGE.... does that mean you & sam will have to put more things, perhaps a hot tube & sand pit...bumpy would love that wouldn't he. have a good day princess Sending you rainbow wishes & fairy kisses Sallyanne, Nick & a very early riser loulou Bunny X X
ReplyDeleteHi Ella,
ReplyDeletewhat a clever, brave little girl you are, walking around with only a teeny bit of help! What a smile you have, I think every photo I've seen of you on your blog you've had such a beautiful smile. Keep up with all your hard work everyone, you are all truly amazing.
Love, prayers and best wishes
Jane Tom and Sean xxxxx
wow ella - how fantastic you are doing now - keep it up. Love to all. Martin xx
ReplyDelete