Hi All, it’s been a busy couple of days and nights, with some being busier than others. I thought I’d give you an example of a quite night and a busy night. Wednesday night was a good one, mum and I had lights out around 10:30 – 11:00ish and I only woke up at 1:00 and 5:00 to go to the toilet. Now for an example of a bad night. Friday night we also had lights out at 10:30 after Britain’s Got Talent. But this time I woke at 12:30 (toilet); 1:30(toilet); 2:30 (nose bleed and to take 4 tablets); 4:00 (toilet and nose bleed); 5:00 (toilet & to be sick) & 7:00 (toilet again), through out this I had two nurses in my room giving me blood and later platelets transfusions, all of this as well as my normal nightly medicine volumes, aspirating my NG tube and check that I was ok. Friday was a horrible night.
On Wednesday I ate some mashed potatoes and gravy, which were lovely. I haven’t fancied anything since then. I continue to be really thirsty and I’m devouring what ever drink is put in front of me. It’s kinda funny because what ever I eat or drink comes back up into the bag at the end of my NG tube so you get to see everything. It’s ok for drinks, but its not great for rise and it’s horrid to see potatoes.
I’ve been working with Paula to create a fruit bowl and a shoe all made out of modeling clay. I’ve made loads of fruit but the best thing is the shoe, it has a very high heel and we painted it pink, with pink ribbons, have a look at the photo (ups I can’t find the camera so I’ll put the photo up when I get a chance).
Both yesterday and today I’ve had a pain in my back and one in my tummy. Each time the doctors have given me some morphine which sends me asleep, so I’m sleeping a lot during the day. Of course we are still watching Friends and have been following Britain’s Got Talent each evening and Dad and I will be watching the final. I’m not sure who I want to win.
My bloods have gone down a little, here are today WCC 1.1 neutraphils 0.79; crp 192. I am on some immune suppression drugs because of my GVHD and that is causing my bloods to drop a little. My rash is improving, a little, still have to do the creams 4 times a day. We are going to start ATG next week, well that’s the plan it will be interesting if it happens.
Lastly just a couple of thanks – Eoin (dad’s work) & his two daughters for my fab card and books. Anne for my first ½ birthday card !!; Julieann for the cards; Paula for my fab pink back scratcher (which I love). Margaret for the card (love the pictures on it). Sorry if I’ve left anybody out. That’s all from Newcastle. Love Naoise.
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HeLLoH Naoise ,
ReplyDeleteWe are watching the final and we think that Diversity and Juilian Smith will win it !
I will just be happy who ever wins !!
Did you like the books we sent ova and I read the one Under The Hawthorn Tree in school and you read that one frist then read Wildflower Girl !
They are really good !
I enjoyed them alot !
Well going to watch the rest of the results of Britains Got Talent !
Hope you enjoy the books and the show !!
Love all the Murphys !!
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hi naoise hope you feel well and i hope your rash goes away
ReplyDeleteColleen
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Hi Naoise
ReplyDeleteWell that busy night certainly sounds very hectic.Did you watch the final of Britains got talent, were you happy that Diversity won, I thought they were brill and deserved to win.
It is so sunny here and we went on a picnic yesterday to Ardgillan Castle. My mam put suncream on all of us but forgot herself and burnt her back. She is doing the mini marathon today and has to cover up because she is pink.
Hope you find your camera would love to see your fruit bowl and shoe, it sounds like fun.
Well better go now and talk to you soon, hope you have a few more quiet nights.
Love
Isabelle and Sophie
xoxoxoxoxoxoxox
HI NAOISE
ReplyDeleteI HOPE YOUR RASH GOES AWAY
FROM RACHAEL
XxXxXxXxXxXxXxXxOoOoOoOoOoOoOoOoOoO
Hello Naoise,
ReplyDeleteIm sorry you had such a terrible night on Friday night, it was a very busy and hectic night. Thats terrible you have a bad pain, i hope it goes soon and i hope your rash goes away soon too.
Thats good that you ate some mash potatoes and gravy. Your fruit bowl and Pink shoe sounds brilliant, especially the pink shoe with the high heel, i cant wait to see the photos.
I loved Britains got Talent, im sad its over. I watched the final with Audy Kiel and Zoe and we all wanted the dancers to win. Im gald Diversity won, i think they are brilliant. Did u like them?
Its nice and sunny here at the moment and i got burnt yesterday!
Take care honey. Miss you so much.
Lots of love,
Aunty Chrissie x x x
Hi Naoise,
ReplyDeleteWe're home! We got home yesterday and I fully intended catching up with you last night when the kids went to bed but I fell asleep putting Oisin to bed, oops!
You've had some very rough nights, you poor pet, it must be horrible to wake up with a nose bleed! Your crafts with Paula always sound so interesting, where does she get her ideas from?
It was a lovely day here today, I felt sorry for all the women doing the mini marathon, it'd be extra hard work in that heat. We had a bar-b-q and kept all the bones from the ribs for Bailey.
I hope all the prep for your 1/2 birthday is going well. I'm delighted you like the back scratcher, I'd never have thought of it in a million years only for Nana Ruth mentioning it. If there are any other weird and wonderful items you'd like please let us know, I'm pretty sure you can buy anything on eBay!
I hope tonight is one of the quiet ones for you pet! Oisin wanted to pray to the fairies for you tonight instead of Holy Jesus so hopefully the fairy prayers will bring something good your way.
Night pet, thinking of you always.
Paula xx
Hi Naoise
ReplyDeleteWe're back too! We've come back to as much sun as we had in Spain which is nice. I still have to put suntan lotion on Donncha and boy does he hate it. I must admit I hate putting on suntan lotion myself - though I don't kick and scream :-). Anyway, it made me think of you having to do it 4 times a day which must be horrible, but I am glad your rash is getting better and hopefully the creams can stop soon.
The guys are not back in school til tomorrow so it still feels like a holiday. Jack has his school tour to Baldonnel airport tomorrow - he's really glad he didn't miss it while we were away.
We had some friends over for a BBQ yesterday, they were all asking for you. They've never met you but alot of them read your blog so you have even more followers than just the ones who post!!
I really hope you are feeling a little better today. We miss you lots. I know it must be so hard for you but hang in there - all the 100's and 100's of days when you come home will be wonderful, I know everyone will want to do at least that for you!
By the way I used to find your weird combinations of food bizarrely entertaining, but when you write about what comes back up in your tube...well that surpasses the weird and wonderful food combinations by far! You write it all so well...maybe there's a budding journalist talent there?!
Hope the half birthday plans are coming along well - only days to go!
Lots of love
Aisling
hey naoise
ReplyDeletehope you feel better soon
love hannah
Hey Lovely Girly.
ReplyDeleteI finally figured out how to leave a message. YAY!!!! Put it down to me being old and useless with technology.
Gail's been keeping me up to scratch with how you're doing. She's really proud of you, as am I.
I've been checking out your photos and I particularly like the pink bob. My hair went through a red phase but I'm back to my natual colour now....HOT PINK.
I'll be dropping by more often now that I know how to find you.
Be talking to you soon Pet.
Take care.
Love,
Ali......Mwah!!!!!