Well Christmas is over for yet another year. Kinda scary to think that a full year has gone so fast! But also lovely because 2006 has been a wonderful year! At the beginning I was expecting it to be pants but it turned out amazing. I went to POTC2 Premiere, I passed my driving test, I got excellent GCSE results, I became a godmother, but most of all I am still alive a year later without needing to be listed for transplant yet. That is a major achievement in my books! 2006 also had it's downs, but when I'm old (and not wrinkley, botox is a wonderful thing!!) I will always remember the highs, not the lows.

But back to Christmas. I came home from hospital on Thursday and felt rather well so decided I would take advantage and do lots. Big mistake so I spent Christmas eve on the sofa under my duvet resting and even got dad to do my physio for me! It was so worth it though on Christmas day. This year my entire extended family all decided to return home for Christmas. It was magical! We went to see Kayne after much present opening was done (after finally getting to sleep at the horrible hour of 4am and woke again at 6, opps!). He was too young to know it was christmas but did love the fact that winnie the pooh sang songs, ok I have to admit I was more so than him but still! We then headed to my dad's mum's house to see family there. It was utter mayhem! But lovely all the same. Me and my two cousins, dad and my uncles mark and connor all decided that then would be a wonderful time to try out mark's new flying aeroplane thingi. Um no. We ended up froze outside so decided to try it in the living room (I should point out my gran's living room is HUGE!) I think the last count of times people were hit was 13. Yes we were wonderful at it! It was however highly amusing so was well worth it. Then on to my other grandparents house for dinner. We arrived and I promptly fell asleep on the sofa until dinner was ready (this may or may not have been a tactic to avoid being sociable but I still needed the sleep). Granny as usual made a gorgeous christmas dinner (I am a sucker for my granny's cooking at the best of times!). I decided to eat more than my weight in food which everyone thought rather funny that a tiny person could eat so much, yet mum still thought I needed calogen grrr! But between dinner and desert I fell asleep on dad's knee. He kicked me off though once I started to wriggle because I am quite boney. Oh well it was good while it lasted! Desert was then made specially for me because I wanted it (yes I know I am spoilt but good spoilt not bad spoilt!). So after opening more presents and chatting for a bit we headed home so I could rest as by this point I was ready to fall in a heap and pass out. So once home I slept again then watched ridiclous amounts of two pints of larger. It was great!

Boxing night my mad mother decided to invite all family over for drinks. Me, ryan and connor ended up in my room playing the 360 and geting very drunk. Thankfully all grandparents had left by the time we got to the point of 'I really need to sleep or be sick now!' It was a very good night though and we did be sociable for a while. I think the adults were just as drunk as us though! Four people slept in my bed that night and somehow no-one killed each other. Quite a thing when all four of us are very restless sleepers!

I am incredibly proud of how I held up over the Christmas period though. I manged to have a wonderful time yet manage to take care of myself at the same time. Normally it's one or the other as once I start enjoying things I forget to rest! I did start some orals on Wednesday to combat a rather lovely cough I have but hopefully they will work and no IV's will be needed! After leaving hospital I was at my lowest weight ever and still havn't managed to put any on but that will take time!

I am now really looking forward to 2007!! So that is all for now.
Happy new year all and I hope everyone had a wonderful christmas!
Neesh
x

The little things!

It's the little things you miss when you are in hospital. I've spent the past week in there. Normally I never spend more than 3 days but this time I wasn't getting let loose, even with my tantrums, huge amounts of tears until I got to the point I couldn't breathe, and much not speaking to them and locking myself in my room (No, I am in no way whatsoever childish). I should actually explain why I behaved so badly, even for me. I went into hospital on Friday for two weeks, on two conditions, I was allowed out in the afternoons after physio and IV's and that I was allowed home for the weekend. Monday comes and my consultant and the ward sister walk into my room (never ever a good sign) so I immediatly get put in a bad mood. They then say that I'm not allowed out, and my consultant then has the cheek to turn round and say that he never agreed to either condition the previous week at clinic. They also used the pretty dam mean scare tactics to try and scare me into thinking they were right. Pretty much I had had enough so started screaming and told them to leave me alone. I then ring mum who gets incredibly upset because it's not nice having your 17 year old daughter in tears down the phone to you when you are and hour and a half away in work. So she rings dad. Now my dad is very calm and rational, he normally sides with the hospital on most things. But not this. This he was furious over. Mostly because by the time he had gotten to ring me, a few more members of the CF team had been in to tell me how wrong I was and that I was staying in no matter what. So he was royally pissed at the fact that they had all ganged up on me, changed their minds on a week ago and had left me dissolved in tears scared to death. Me and my mum are the two things that you do not screw with in my dad's life. As much as I can hate him at times he will always be my daddy, the one who taught me how to ride my bike, the one who roll down the big hills with me no matter how muddy they were, the one who passed out when I got my first long line put in, and the one who's cuddles will always make me feel so safe. But he rang the hospital and pretty much had a hell of alot out with them but agreed that they would meet on Wednesday to talk properly, but for now I was allowed out. So they came up on monday night, mostly just to calm me down and keep me company. I was in no fit state to drive anywhere so going out was out of the question anyway. I spent Tuesday not speaking to anyone except having a big falling out with the head physio and my dad telling her where to go and that she wasn't to treat me ever again (yay for that). I spent Tuesday evening out with Cris. It brought me back to reality. Until then I had been living in the CF hospital world bubble. I hate that bubble. It's so unsafe, it leads to scary trails of thought. But just the normality of being out of the hospital environment was lovely. So I went back all ready for the meeting. Picture the scene, me and my parents one side of the confrence table, my entire CF team on the other. Me and mum were reduced to tears by the end of it and my dad was again royally pissed. It did however let all of us vent some of our annoyances with the hospital (ie they enforce segregation yet none of the nurses wash their hands, they say it's good for you but 5 days in and my weight had plumeted to an all time new low and I was in a really bad state mentally). But we did come to an agreement about my treatment. All I can say is bring on the adults. I had decided that I wasn't looking forward to moving, but after this week the sooner the better in my books. I still havn't spoken to very many of my CF team and don't think I will until I leave as they have really pissed me off and upset me.

Hmm that ended up rather long winded but I guess I needed to get it out of my system as it has been annoying me. But update on health, lung functions up a bit (as much as they'd be if I was at home) weight is now at a new all time low (41kg, I can now see all of my ribs and every bit of my spine, its not a nice sight) and my sats are still pretty low. So all in all IV's are not doing a very good job, except proving my point that hospital isn't better than home. Mostly because I'm not going mad at home and heading right back to where I was months ago. They also suggested I see Kate, she is our CF psychologist, instead of Pete. To which I oh so polietly told them to f off that Kate was useless and I wouldn't be here today without Pete. This didn't however stop them sending her down. Que locking of oneself in her room and putting a chair there so even once they unlocked it from their side they still couldn't get in :D So all in all this has to be one of the most pants times I've spent in there. I did however get to meet Drew. Every so often one of us regulars stubles upon a newbie that isn't in very often. it's fun to get to know them and to show them the ropes up there. Drew is 17 and has only been in 3 times, none of which were CF related. So he was pretty innocent in the workings of the CF unit. I think I've taught him well as by Wednesday night he was the one dragging me out of my room to have a laugh in the kitchen, or rather watch him dive though a hole in the wall into the gym. I swear he has the mind of a 5 year old. But it's fun! So he was a positive thing to come out of hospitalness.

I've been away from Kayne for a full week now. Not happy. I intend on calling in tommorow to see him. Mum said he's gotten really big now and is alot more alert which is all good. I went to the disney shop while I was in hospital too. Good job all his stuff is still in my car. My mother may just kill me but I dont care hehe.

Anyway gonna go here waffled on long enough.
xxxx

Busy

The past week has been pretty hetic. Saturday was the christianing, which was for want of a better word, amazing. Just very lovely and sweet. It's nice having the family together (bar the ones in england who weren't there). It was also lovely see Connor with Kayne, I havn't seen them together since Kayne was born. So to see Connor dote over his little brother was just very sweet and also re-assured me that Kayne does have a pretty decent set of godparents who worship him hehe. I was shattered by the end of the day though so Sunday came as a very welcome relief. I didn't get dressed all day. It was great. I sat in front of the fire. Friends and family called in to say hi and generally be very lovely. But bar that I done very, very little. Actually I did. I ate. Alot. It was brillent. So I had a very lovely birthday just chilling and seeing all the people I love. Monday and Tuesday however were a huge disaster. Apparntly my lungs had decided that they had been good for long enough and now was pay back. I was quite fine with that actually. I just slept for most of them. Very bad point though, my previously appetite of a horse, has now been reduced to that of a mouse. Rather annoying but hey. Anyways back at school on Wednesday, and I have managed to achieve a new record for me this year. 3 full days in a row where I havn't been off or be sent home. So proud of that fact. It was mostly due to my friends being as per usual amazing, at least one of them left their class early to come fetch me, carry my oxygen and if I needed, push me in the school wheelchair. My teachers also insisted I didn't take notes and photocopied them all for me. I was told no homework, and threatneded by Mr L that if I done any we would lose our party today. So I done very little. I am so grateful for having such amazing friends and teachers and people around me that make things that bit easier. Without them I know I couldn't do this without them. But even after all that I was shattered. School now seems to take alot more out of me. I'm not sure why but it does. My school and parents both agree that maybe I should take a while out and see if my health improves. I see where they are coming from but I am determined not to. I will stay in school, I will finish school, and I WILL go to university at the same time as my friends. CF will not stop me being a normal teenager.

Thats another thing. As of Sunday I am no longer a child. I mean 16 can still be called a kid, you are still young and innocent and stuff. But 17. No that's almost 20, coming out the end of the teenage years. I now need to find a new excuse for my tantrums hehe. But thinking about it, it seems to have gone in a flash. It seems like yesterday I sat my 11+, moved to Thornhill, and most of all it doesn't seem like a year ago I got my car. I still feel like I'm really young. I know 17 is young, but in relative terms here. Compare 13 to 17. Big difference, yet I havn't noticed it. Time has flew by so incredibly fast. It feels like I have blinked and I missed it somehow. I sat on Wednesday with Kayne in my arms, just remembering things from weeks, months and years ago. It was lovely. It also made me rather sad. I still havn't come to terms with not being a child anymore. I like the security of it. I like not having to do anything. I don't like having to grow up. Dam it has it's plus points, very big ones, but it also feels like I'm losing alot. I had he most amazing childhood. I guess I'm just sad that I'm in the last stage of it now.

Moving on as I'm getting rather emotional now. I blame that on the steroids but hey. I am going to spend the weekend with Cris. I am so excited. We plan to eat Ben and Jerry's. Apparntly he has worked out games and bribes for me to eat. I am scared now hehe. We will most likely spend most of it in front of Warcraft or being stupid. I like the time we spend together. We seem to have those conversations that make everything OK, make it all seem worthwile, in the middle of the night while, last time making pizza from scratch. It's one of the reasons I love him so much. Our realtinship can be so easy and free. We can discuss things from monkeys liking bannannas to death and his current favourite, transplants, even while making pizza. Its amazing. So I am now in the packing stage. I hate packing and I know that when I get there he will ask me why the hell I need 3 pairs of shoes for two days but I don't care.
Anyways I'm going to finish packing.
love nad cuddles
Neesh
xx