Life As We Know It

This last week has really been in the fast lane and so much has happened.
First we found out on Friday 8th April that I'm now on the active list and now just have to wait for a phone call from a privet/withheld number.
I'm not at all freaking out about it, I'm really not expecting the call if you can do that? might just be me being odd, everyone else might be running around like a headless chicken (*sad face* - will come back to that one) I'm very happy and clam about it all and just being too laid back maybe? i haven't even packed my TX bag yet, but in all fairness i have started! (New face wipes,tooth brush,tooth paste and baby wipes got) but on the other hand there not even in a bag yet.
Coming back to the *sad face*, my mum and dad have been on holiday all week and me and my brothers have been looking after the dogs and chickens, i.e feeding and cleaning them and harry was at home anyway so they were ok and the day before they got home (Friday)  we found a dead chicken! stiff as a board she was, poor nanny's chicken as said by Connor when he saw the chicken. anyway the inconsiderate chicken passed away right at the back of the chicken pen so it meant someone had to get in there and get her out...Lewis got the short straw and with some marigolds he went in and got the chicken out and popped her in a black bin bag and then took her and put her in a biffa bin - very dignified send off...not.
Saturday we picked my mum and dad up from the airport and broke the news of the chickens passing, mum was a little upset but this is the 3rd chicken to pass away now so i think she is ok with it, the first time she cried so much that you would think it was one of her children or even a dog that had gone.
Anyway Connor was with Matt's mum and dad all day Saturday and he come home not very well, he was sick 2 times in the day and then i lost count of the times he was sick in the night but Sunday looked like a better day and he wasn't sick so we thought he was over it...we was wrong and he was up 4 times Sunday night being sick so no one had a good sleep.
On Monday morning at 8am we took him to the A&E as we was worried me might be dehydrated as he wasn't eating or drinking much but turned out he wasn't and just had a viral infection and if he wasn't any better to bring him back in for some penicillin. He woke up today really happy and back to his old self, that was until he started to get the runs! not pretty and not nice, good job Matt is around to sort Connor out and for once maybe my CF has gotten me out of a nasty job.....?

My tattoo is healing up really nice and I'm really happy with them, will upload a photo once my camera is fixed, all the photos i have at the mo are taken on my iPhone and i can upload them from there at the mo.

Hospital

Back in papworth hospital now, been in since Tuesday and have to stay the whole 2 weeks this time. something I'm not to happy about but i don't think i have much of a choice in the matter.
today's the 1st day that i have woke up and felt well, they changed my iv yesterday as i was getting very sick on the one they put me on.
not good that i have come off it as my Dr said i should stay on the iv to show the TX team that I'm willing to do anything to get a TX but i didn't see why i had to be as sick as a dog to show them that, it would have just made me moody and angry and prob a bit depressed on it, not something i wanted.
i do really want a TX, more then anything in the world, i not only want one but i need one, i need to be here for Connor i need to see him grow up, i need to see him grow in to a man...i need to be his mum, i just need a little help to fulfill that.
i have a lovely bit of art work on my wall in the hospital that Connor did for me at school, I'll try and put load a photo of it but not sure how to do it from my phone, Connor broke my cam the other week and i haven't got another one yet.
Connor came up today with Matt and we all went out for lunch, it was lovely and Connor was so clingy with me, Matt said he is missing me.
I have missed Connor so much and i have only been here for 5 days! over a week left.
i start the tests on Monday, I'm not sure what to except so i guess i just get up and ready by 9am and wait for someone to come see me.
Matt is coming up to be with me for every day of the tests, i need some support.

there is a lot of things i have been thinking of doing when i get my new lungs, go to Italy for a lovely Holiday (not been since i was 16) i want to move house, i want to work, i want to buy my own car, i want to stay in a London hotel and walk around London all night and see all the diff things there are out in the world.
so much more, I'll have to do the header thing on here when i would it out lol

I'm back on steroids so have been eating so much! good news i guess but not for my sugars.
my mum has sent up lots of cans of soup for me to eat....i dint know what she was thinking, there is like 10 cans in a bad and that's it! lucky i got some bread while i was out today, looks like soup for tea tonight!!

i will prob next blog after my tests, fingers crossed for good news............not sure what i will do if its bad......

Feeds

I'm now on feeds now i have my PEG in, still a tad bit sore when i twist or bump it and i cant sleep on my belly anymore but I'm still really glad its in and I'm now doing feeds.
when i left the hospital they sent me home with a weeks worth of feeds and bits, i was all set to do 2 bags on my 1st night home but the hospital had forgot to give me the bit of tube that connects the 2 bags together so for the last week i have only been doing one bag a night but have got that down to having it over 2 hours so that's great.
i do my feeds around an hour or 2 after my dinner as i cant stand doing them overnight as the tube gets in the way and I'm always worried that I'm going to pull it out in my sleep or something.
Anyway i got my 1st lot of feed and bits today from homeward (suppliers) so i can now start and do 2 bags of feed a night!!!!
I weighed myself but it seems i have lost a kg! i think from that it shows that i do need 2 bags a night (2000 cal's) and maybe need to keep a better eye on my BM's and maybe need to tweak my nova rapid a bit, I have just got this new app on my iPhone for BM's and that so that should help as i always forget to write down what they are and then forget when the hospital ask me!

Going to do my 1st gym workout on Monday when Connor is at school, well i hope anyway! have to see if the working men are coming to change the front door on Monday or Tuesday. cant wait to have a lovely nice clean white door and not the nasty paint peeling brown wooden one that lets all the cold air in.

Me and Connor did some cooking today and been playing in the garden, i got the swimming pool out for him but it seemed a bit cold to let him get in it, it isn't as hot as it was yesterday but he was at school all day yesterday so he couldn't use it then.
Today he has mainly stayed in just his pants! i don't mind as its hot, I'm still in my PJ's today so how can i tell him to get dressed!

Really hungry and cant wait for my dinner today! going to make pork chops with baby new pots and salad i think for me and Connor, Matt is going to the gym tonight so he wont be eating till around 9pm when he gets in and i will be on my feed by then so i eat dinner with Connor now and not Matt in the week and at the weekend we all eat dinner together.

Im So Fat! (well fat for me)

I hate my shape, now i have put weight on (and still putting it on might i add!) I'm such an odd shape and i hate it i really do, nothing fits any more and i cant seem to find any jeans that will fit my short, skinny legs and my big preg looking belly!!!!!!!!!
I'm not normally a vain person at all, i have my back and have had it for years now so i don't care about that now (but still don't like it) i just hate my belly, i have always been a size 6-8 and now size 10 jeans are getting to small! i mean come on CF!!!!!!! please give me a break, we have all this other stuff to put up with and now you give me this too.

What brings this on i hear you ask, well i don't have any crop jeans or cropped combats and i want some for the summer so have been looking for ages and couldn't find any, well i for 2 pairs great ones today, one of each too and i get them home (there a size 10 by the way) and i just cant do them up. i even nearly cried over it, how silly is that.
I now have to go back to moz and change them for a size 12 but i will try them on in the shop this time!

I also got Connor a green lamp for his bedroom too today and i like its great, it is nearly the same as his green wall in his bedroom so i like it but Matt thinks it looks like a old person lamp as its just a plan lamp.

I have lost my cable to charge my camera so i cant put any photos on my laptop and i cant take any more! its really making me angry coz it was here a few weeks ago but not now.

We also got a new bin today as our old one died.........it was one of them push top ones (2nd one we have had) and Connor bust it (like the 1st) so today we got a pedal one so i hope he will leave this one be, i tell him its not a game but he don't seem to care he just thinks its a new toy for him.

I'm off to bed now as Connor was up at 5am today with a messy nappy and then wouldn't go back to sleep but at least i was up and ready to take my i.v's on time lol

Bit Of A Worry.

Well matt came home from work last night and said that his days at work had been cut from 5 a week to 3 a week.
Its a bit of a worry to say the least, we just about get buy with what were on at the mo so taking a loss of £500 a month is really going to mess us up.
We have bills and credit cards and stuff to pay for and we already don't go out much and never for meals and only get a take a way once a month or so.
They have to wait till September at least before they find out if they go back to 5 days a week.
The council wont help with the rent as when Matt 1st went back to do last year he did 3 days a week and so was the same money and they wouldn't help then so I'm not holding my breath that they will help us out now but we will ring them to find out for sure, i might do that today, give them a bell I'm sure they will send out some paper work or something like that.

Connor has been in his single bed now for a week and he is doing so well, he cried the 1st 2 nights but after that he got right in bed and falls asleep on his own, I'm so proud of him.
He is growing up so fast!

Books, i.v's and everything else!

Connor's bedroom is all done now, only took a month! i have already started to rip the wallpaper off mine and Matt's bedroom but he says he is having a weekend off this week and will sand and paint next weekend so i have a week left to rip the rest of the wallpaper off at least.

I'm on i.v's at the moment, i come off them on Monday so not long at all. this last month has just flown by so fast that i don't know where i am lol

My LF was 37% when i started my i.v's and on Monday it was at 44% so that is great news at only a week in, hope it is up at 46% by Monday coming! my wight was 54.2kg when i started and on Monday it was at 56kg!!! i think that is wrong. they had moved them for a start as they were painting the LF room so i wonder if that has anything to do with it at all and I'm not sure its the normal one that i use so that too could make a diff and because when i got home and weighed myself mine said 55kg. we will see what they say on Monday coming.

Its Connors birthday in 3 weeks and 3 days!!!!! wow i cant get over the fact that my little baby is 2! he will be at school before i know it.

His new thing at the moment is Toy Story so we have got him a Buzz Light-Year for his birthday along with tons of other stuff....i may have gone a bit over the top but he is only 2 once right :D

I have been reading at lot this last month, read all 4 books from the Twilight saga and The Host book (Humans become hosts for these invaders, their minds taken over while their bodies remain intact and continue their lives apparently unchanged) and a book called Mummy Said The F Word! all very good books, i have ordered 2 more books from Amazon and they should be here in the new few days.

The old coal shed in our garden is getting pulled down on Monday so i cant wait for that to get started! i will take photos and put the up, along with some of Connors new room and ours and some of Connor himself! :D

Anyway i must get off as this hot weather is to hot to just sit about in. i need to find my fan....

* I have put some labels on this post...not sure i have done it right but we will see *