Friday, May 1, 2009
Day +77 & +78
Hi all, the last couple of days have been quite. I’m getting a little more sleep at night than before, by that I mean that I’m up about 7 or 8 times a night. But last night I needed to have 2 bloods and 1 platelet transfusion which meant that the nurses were in quite a lot. I know they try hard to be quite but some how you just know that somebody is in the room. Yesterday was quite, dad and me played the Wii for most of the afternoon and that evening we tried the Wii Sing IT and made one of the nurses join in, it was kinda funny, but my dad just can’t sing. Each afternoon we have an little nap, its our new thing. About 3 each afternoon we turn the lights out, close the blinds and have a nice sleep it really helps catch up on the missed sleep at night. Today we spent the morning painting using acrylics, it’s funny the morning just flew by. Teacher came in about 1:30 and we did a little work and then it was time for our nap. The doctors want me to try a new medicine that will stop the blood going to my gut which will give my gut a rest and help it to heal a little. I’ve to take the medicine for 72 hours and see how we get on. The problem is that I can’t eat and only drink a little while I’m on this medicine. The not eating is not a problem as I’m on something called TPM which provides me with all my neutrinos through my central line and means that I don’t feel hungry, the not drinking will be hard. Prof Cant has reduced my steroids down to just 10 mlgs per day, last weekend they were at 500 mlg. The hope is that this will encourage my new bone marrow to start producing all my bloods by itself, it hasn’t happened yet, but lets hope that it does by the end of next week. To allow everybody follow my bloods progress I’m going to print them each day, so here are todays, Platelets @ 29; WCC @ 0.2; Neut @ 0.08 – so watch out for these little buddies. That’s all for tonight. Thanks to everybody for my emails, sorry I can’t respond to them all. Lorna it was great to talk to you, sorry that we got cut off it was dad’s fault. Nite nite, love Naoise.
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Hi Naoise,
ReplyDeleteI'm so glad you are getting a little more sleep at night, it's slow progress but at least it is progress! I hope the new meds do their thing!
We will be watching those figures - I'm assuming the numbers should be going up?
I hope you saw the picture of Zoe I texted to your Dad, I tried to send it to your phone but it wouldn't send. She is a real beauty, so tiny and perfect.
Oisin had his friend Milo over to play today, 4 year old boys are so funny to watch. I think they are both black and blue from all the falling around they did. I'm exhausted after them.
Caitlin is crawling but doesn't realise that she can crawl, so she crawls when she wants to reach specific things but thats all. Sadhbh's tooth fell out on Tuesday and she didn't tell me, apparently she was testing my observation skills, I guess I failed that one!!
I'm glad you enjoy an afternoon nap, that sounds lovely. And I hope your night time interuptions become less and less! You are such a trouper.
Night night pet. Lots of love, Paula
Hi Naoise,
ReplyDeleteGlad to hear that you are getting a bit more sleep even if it's still not enough...but you are getting there. I'm sure like everybody else I will be keeping an eye on your numbers and hopefully they will improve. I'd say you'd be lost without the Wii, it seems great for keeping you occupied and to help with the boredom.
well i hope your gut continues to improve and your numbers get better and we are all praying for you back here in dublin.
Take care
Paul
hey naoise Maeve here
ReplyDeleteHow are you feeling today. It was the bake
Sale today. Hannah won a unicorn in the raffle
Ellen won a purse rachael won a frame sibeal won
An egg holder with a chocolate egg in it.
What your fav game on wii. Mine is wii fit.
Well I better go love always xoxo
Maeve xxxx
Hi Naoise,
ReplyDeletegood to hear your getting a little more sleep at night - & i like the idea of a "nap" in the afternoon!! Wish Séadna would try that out 2!! Hope your gut keeps improving & bloods progress well.
The Wii Sing IT sounds fun - i bet i could sing even worse than your dad!! ;-)
Take care
luv maggie & séadna xxx
Hi Naoise
ReplyDeleteI'm glad you are feeling a little better and getting more sleep. Even as I type this I am hoping & praying that things keep going steadily in the right direction for you. Fingers crossed that all those "little buddies" get great scores each day. I am rooting for each and everyone of them!
Today started nice & sunny but then it turned in the late afternoon and we got a bit of rain. But by then it was too late for us - we had already lit the barbeque! It could have been a thunderstorm and we'd have still gone ahead with it. You see we bought the barbeque nearly 2 years ago and believe it or not this was the first time to use it so nothing was going to stop us!
Anyway, we nearly got food poisoning because your Uncle Michael brought in the most raw looking meat you ever saw and said it was fine. Really he was just in a rush to see the Leinster vs Munster rugby match!! So Donncha and I finished it in the rain and he had loads of fun.
Leinster were very nice and won the match so lots of smiles in this house.
I'm feeling a little full now - we made brownies, banana bread & fairycakes today for my sister's get-to-gether tomorrow with her new in-laws. Too much tasting as we went along so a few sick tummies too!
Caoimhe said this morning that she had a dream last night that you were all better. I know it's a way to go, but we're keeping that happy thought. We miss you lots and know it's hard for you to be there so long, but hopefully as you get stronger the days will be more bearable, especially if you get lots of play nurse dates!
Stay well, stay strong, thinking of you always.
Lots of love Aisling xx
Naoise you are such a little star. Even though you've been so tired and uncomfortable you still smile in every photo!
ReplyDeleteI hope that the new medicine has you feeling much much better, very very soon.
I'm helping out with a show in the Gaiety at the moment. There are a few things left bacstage from the previous show - high school musical - little notes and stuff like that so I'll send them over to you! Ali is in doing hair and make up. I'll take some pictures of her creations and send them too!
Sending you a very big hug.
Gail
xxx