Hurrah! Mum escaped home for an hour tonight!! Albeit no-one knew but we literally live right beside the hospital so she was safe enough. But she came home and I washed her hair while dad went and got a chinese for dinner. It was lovely to see her and to get a cuddle. I was right about my parents can make it all ok theory. Somehow things seemed better tonight after seeing her. I am much more contented that she is OK. Bar the fact that she is going mad in hospital. A lovely patient 2 doors down is yelling. Permently. Personally I would kill her. But this is against the law so mum has had to suffer it! Her drain is still in, which we were getting worried about except the physio has since said where still needs infelated, is notoriously the hardest place to re-inflate and does take that bit longer. Why can't we get all the facts to begin with to save us worrying so much?! But she has now been able to get all 3 balls up this evening which is another huge step. She said getting her hair washed made her feel normal again, and now she knows why I like my showers and stuff so much when I'm in hospital. So hopefully the drain will be clamped tommorow and she will be home the day after if her lung behaves which it has been doing so far.

I managed to stop pain killers for my back yesterday as it wasn't too bad, it was within the manageable pain parameters. But today I woke up and my shoulder has decided that it no longer wishes to be nice. Dammit! I am going to go to the doctors tommorow after my exam. Which should be fun as I am currently typing one handed as I cannot move my arm in any shape or form, plus writing is impossible, I have tried! It should be intresting to see how I plan to write 6/7 pages tommorow without pain killers (can't take any strong ones as they make me drowsy which would make me useless to do an exam!) EEK! Natalie has suggested that this is my body's way of protesting against a hidious exam. I am inclined to agree with this! My chest has also been playing up majorly yesterday and today. Just general shortness of breath and alot of wheezeyness along with incresed gunk production. I was quite proud of one of the plugs I got up earlier. It was HUGE and very green. Me and dad marveled at it for over 10 minutes. Yes I know, we are strange! Hehe.

I mentioned a while back that with my month or so off school it was a kind of tester period. The results show that with rest and purely taking care of myself, my health stays pretty stable. This leaves me in the debate of what to do about school. I am not keen to give it up. School is somewhat of an escape for me, where I can just be me. I have always done well in school. So the thought of giving that up crushes me. It also keeps me in touch with my friends and with reality! So giving it up is not an option. I am thinking maybe cut my hours? Take one day a week off, say a Monday or a Friday so I have 3 days to rest? I'm not sure yet but will talk it over with mum and dad once mum is home. It won't be an easy choice whatever I decide to do but I know my parents and my school will be 100% behind me whatever I choose.

On a very different topic. Mum and dad were due to go to Amsterdam Wednesday week with a few friends, but mum now can't go. So me and mum have now decided that dad is going anyway and his brother is taking mum's place. He has always wanted to go so this is the perfect opportunity. This leaves me and mum at home for a few days alone. We are planning to be very girly and watch lots of girly films and eat lots of ice cream. I'm planning on taking her out to her favourite restraunt as a suprise because she's missing out on Amsterdam. So it should be fun. Plus dad will deserve a break by the time he's due to go. He's shattered now running up and down to the hospital to mum. I am taking care of the house so he doesn't have to worry about me or it, but it is still stressful for his. Especially as his mum was up this morning for some tests. She now has one thing or another wrong with every joint and limb in her body. Quite an achievement I think. She can't even take any pain killers because of her kidneys so during flare up like at the moment she is in agony and can't do very much so dad has had to run over to her house to look after her and his sister (she is disabled). Bless him he's being amazing for everyone! My parents rock! Hehe.

Hmm babbling now.
Take care all.
Xxxx.

Well my lovely mum is still attached to her chest drain. This morning's X-ray showed a very small amount of fluid at the top of the lung so once this goes the drain can come out. The surgeon was very happy with her. We are all also alot more contented as the nurse did say it can take up to 5 days to heal. Some people can take longer. So dad took her up a TV today. She is now managing to get the third ball in her blowy thingi moving, which is uber good so YAY! Other than that she is doing well, in a bit more pain than yesterday, but as dad keeps telling her, pain is good as it means she is healing!

On other matters. I was looking through the CF forum tonight and seen a topic on having another child after one with CF. This is, for all concerned a very emotive subject. My mum and dad choose not to have any more children. They thought that it wouldn't be fair if the child had CF. Not only on it, but on me due to cross infection issues and ineviatbly loosing a sibling. They also decided against any means of testing if the child had CF as they thought in years to come that it might make me feel inadeqaute as they choose NOT to have another child with CF. That in some way I wasn't right. They also couldn't tell that child that we only choose to have you because you didn't have CF. That isn't fair on either child. And I guess I can see their reasons as yes it would make me feel horrible knowing my parents thought I wasn't right. I wouldn't however wish CF on anyone let alone a sibling!

I am incredibly happy as an only child. My parents are amazing and I love them to bits. They are incredibly supportive. But I do know that they do blame themselves for my CF sometimes. Which was another factor. They couldn't willingly bring another child into the world knowing it stood a chance of having CF, because if it did. Simply, they would, this time be to blame. First time round is plain bad luck. Second time round is, in my opinion selfish. It should never be about a parents want for other children. It should be about the child and the fact that they will have to live with this horrible illness. The CF prognosis might be improving, but the fact is, it still sucks to have, you have to live by a gruling regime of medicines and treatments. And inveitably, it will kill you! How could you have a child knowing that they would have such a life? Now I'm not saying a life with CF sucks. Mine rocks. I love it. But I am dam sure I would love it a whole lot more if I didn't have to sit doing treatments for hours a day, be tied to oxygen all the time, have the hospital be like my second home, and see so many close friends die, some right in front of me!

I am not however condeming people who have second children, but I do think those that just trust luck for the child not to have CF are incredibly selfish and stupid (yes I know thats horrible but it's how I feel!). Each family will make a very different choice on what is right for them. My parents made their choice, and to be honest I think they made the right one. As I said previously this is an incredibly emotive subject so this is just how I feel on it. Every single person will feel differently about it. And each opinion I value equally as each person has their right to it.

I don't really know what the point of this blog is, but I'll post it anyway as it's made me feel slightly better.
Take care all.
Xxxxxx

Wow. It's been a really long few days. I'll start off with mum update. X-ray yesterday showed her lung was almost fully up, but not quite there. So the drain is still in place and will be re X-ray'd tomorrow and we will go from there. The physios were round yesterday as well with her. Bless, she isn't impressed in the slighest bit with them. They have given her a little ball type toy to use. You take breaths in and you must make the balls float. There are 3 balls each a different weight. She can now get the 1st one fully up and the second a bit. Last night none could be gotten up. So another huge step. She was also walkng alot more today with dad. I am incredibly proud of my mummy she is doing soooooooo well with all this. So yay for mummy. I went into town today and spoilt her. But she's my mummy and I'm allowed to dammit! Luckily the only pain she is getting is from the drain which is good considering. Nurse tonight said it could take between 3-5 days for her to heal with the drain in. But I don't care as long as she is well again. It's very strange not having her at home. I miss her loads as I'm not allowed up owing to too many nasty bugs runing around the place. So I do want her home asap but I want to make sure she is well before coming home and not home when she reall should still be there.

Clinic yesterday was fun. My lung functions are UP! Yes thats right UP! Apparntly being a lazy sod sleeping most of the time works! Weight is at a new all time low. Sats are pathetic but hey. CRP is through the roof. So with the adult team being over (they come over once a month to teenage clinic to get to know us before we move!) i had gotten one of their consultants at clinic. She was happy to let me go home with some orals and more nebs to bring my crp down but wanted to check with my current team. They said no. They wanted to do IV's. So I not so very nicely told them where to go. Hurrah. I think I might like my soon-to-be team :D:D

Bar that not much other news. So I shall buggar off to bed.
Take care all
xxx

Life is fragile. Incredibly so. I learned that lesson in abundance today. I knew it before but today it hit home. Too close to home in fact. My lovely mum is currently residing in the wonderful hotel of Altnagelvin hospital. This would be due to the fact that last night she managed to fall spectacularly down the stairs. Me and dad checked her over for any major broken bones before she was allowed to move. But then she went back to bed just being a tad sore, which is after all, to be expected when one hurtles down the stairs and hits a rather solid table at the bottom. But she got up this morning in rather huge amounts of pain and so dad decided A+E were to be graced with their presence. I wasn't woke as they quite rightly pointed out I would have worried myself sick and done no-one any good. So by 12 I was up and about, now getting rather worried as no-one was at home or answering their mobiles, when dad rings. Now when you hear the words 'do not freak out' you automatically freak out right? Well I did. So as it turns out my lovely mum has got 2 broken ribs and a cracked rib. Now this would be enough for most people, but um no. Mum decided that this wasn't and so also has a pneumothorax. A rather large one as well. So she has had a chest drain placed and the doctors are very happy with her and hope to only have the drain in for 24-48 hours.

I was allowed to go and see her for a bit this afternoon. Although dad had assured me that she was fine and was doing well, I couldnt relax until I had seen her for myself. She was fine and was talking and everything when I called in. Even pronunced that she would be in work on Monday. Yes, she is mad! Then went to granny and grandas to be fed as I hadn't eaten all day. I wasn't even hungry but ate just to appease them all. But if I'm honest, seeing my mum lying there hooked up to the monitors really shook me. Parents are those people that are our rocks. They aren't meant to get sick. They are invincible. So it scared me a bit to see her like that. Everyone has quite rightly pointed out, that it could have been so much worse. So for that I am really thankful.

My lovely grandmother (dad's mum) rang this evening. Now by then I had calmed down as I had seen mum and knew she was fine and would be OK. So I was no longer a crying wreck. But she rang and she seems to make mountains out of mole hills and managed to get me all upset again. Thanks. So off the phone to her I rang my other gran who promptly sent my granda over to make sure I was ok. It simpley took a friendly face, a hug and the reassurance that, yes she was fine and yes she was very lucky. But my mum is built like an Ox, she goes to work with the flu when most crawl into hibernation, she is incredible! So I have relaxed somewhat again. I am still really worried about her. But I am allowed to be, she is my mummy and I'll worry if I want to.

Dad called home about 10.30ish to grab something to eat and do the update phone calls. At that point mum was getting some more colour in her face and had been given some more pain medication. She was however still in A+E. She has had her chest drain in since 2pm. so over 8 hours later she still hadn't been moved to a ward! At that point there were 5 waiting for bed's on a surgical ward (where mum will be going owing to the chest drain). However none of these beds are likely to free up overnight! There was talk that she may be moved to HDU for tonight though. Not that she needs to be there, but that there may be a bed there and the fact that she does warrent some extra care with her chest drain. So hopefully she will have a proper bed soon enough. Dad has been with her all day. Bless him I really feel sorry for him. He has had to be strong today for everyone but I know he is really upset and worried about her. He has been amazing for her today though so YAY for daddy too. I've managed to keep pretty busy tonight. I've just generally been footering about the house tidying and cleaning. My theory for this is that when I sit down I start to think and thinking isn't good. This can also count as half a physio and exercise.

I am planning on heading to bed pretty soon as I have clinic tommorow. Dad is going to come with me. I'd much prefer he stay'd with mum but they both want him to come with me. So that should be intresting. It will be my first clinic since the big arguement when I was in. I will also be telling them I'm moving to adults in July. Oh the joys. Oh and that I am not going in for IV's any time soon. My theory is that they aren't doing an awful lot. This is now my new normal. I have gotten used to that. So there is no point in giving IV's if I feel well. Why not keep them for when I really need them? Because honestly I'm suprised that I havn't built up alot of resistances with the amount of IV's I've had over the past few years. I will put this point across tomorrow. This is the way the adult team work and I think I will like over there so much better. Plus I need to be at home right now. Not 100 miles away in hospital. Which messes with your head anyway. So mentally going in there right now would screw me up big time. My mum needs me now and I will be here for her. She has taken care of me for 17 years. Now it's my turn!

Anyways I'm now waffling.
Take care all
xxxx

Sleep would be good right about now. I havn't been able to get to sleep at a reasonable hour since pretty much being in hospital. My time clock was threw out of wack in there, just like pretty much the rest of me then. But I havn't been able to sort it out. I was getting there but then I ended up being up all night coughing. Not much fun I have to say. So it's almost 4am and I've tried everything to trick myself and my lungs into sleeping. When one agrees the other has a tantrum and says no, much like a 5 year old not getting their own way. So my new plan of attack is sit up all night until I fall over in a heap. Either that or kick dad out of his bed and sleep in with mum. There is something very soothing knowing that my mum or dad are close. Yes I know their room is right next door but its still different. I can see why children come into their parents beds at night time. Especially when scared or upset. Like tonight. I'm actually getting really upset that I can't sleep and so all I want to do is for my mummy to make it all better. Now I know this is completly irrational and cannot happen, but that is what lack of sleep does to a person I tell ya! But it does on some sub-conscious level relax me. When we are kids, our parents can and do fix everything, be it a broken toy or a new cut. So I seem to have carried this on with me, I know my parents cannot fix my body, but they can help me soothe and heal my mind, which I think right now is playing a huge part in my lack of sleep. I seem to imagine it dancing around a fire going 'hah I'm in control now so your not going to sleep till I say you can' and then proceding to start making food.

This is another huge issue at the moment. I cannot gain weight AT ALL. I have been eating like a horse, even when I don't want to. I've had all the supplaments of the day. Yet I'm still weighing alot less than I should do. I am now actually getting incredibly sick of eating. I used to love food. Now it's more just something to put weight on. Not to be enjoyed. But like another medicine I must add to the already endless regime. Only this one, must be taken every few hours, in large, calorfic amounts. With people staring over you, scrutnising every morsel of food you do and do not eat. If I eat well, not that that happens often, I get the well done, why can't you do that all the time speech. If I do bad, more than likely, then its the unforgiving eyes as if it is somehow my fault that I cannot eat anymore. So I am on a protest against food. I will now only eat what I want, when I want it. I want to enjoy food again, then I might actually put on some weight, eventually.

Hmm sleepy enduced ramble there. Oh well.
take care all
xxx

2007 ROCKS!!!!

First bit of big news, which most will know already, but still. Miss emily got her new lungs :D:D:D She is now off the ventilator and breathing with her new puffers all by herself! Although there are some more hurdles and a very long road ahead, but Em has overcome two of the major ones. I am so happy miss emily got her second chance at life. She deserves it soooooo much. I really hope she is enjoying breathing with her new lungs!!

On other news, my best friends big sister, who has pretty much been my acting big sister for the past 13 years, has had a baby girl!! Baby Zara was born by C-section and weighed 8lbs. Big bruiser. Can't wait to get over my cold and go see mum and baby when both are at home. Ryan, the daddy, is apparently just crying. Bless him, Damien done the same with Kayne. Which leads me and Orla to think that this may be in the rule book for new dad's.
1. Must cry bucket loads.
2. Must become one of those soppy people they swore to hate.
3. Must starve ones self for not wanting to leave baby and mummy.
Thses are the 3 we have come up with so far. I'm sure there are others but still.

On Kayne news, he is doing really well. He nows weighs 15lbs. Big bruiser. He rocks though and doesnt look podgey, mostly because he is very long as well. He is just amazing and he's starting to really grip things now, its soooo cute!!

Bar all that not much other news so take care all
xxx

YAY! A brand spanking new year. So happy new year to all and I hope 2007 brings you all your dreams and gives you the strength to get through the rough patches. The begining of a new year, for me is a chance to start over. To put the past year away. To store the memories, good and bad. To remember and be thankful for all the good ones, but also to learn lessons from the bad ones. A chance to set yourself new goals. I also seem to evaluate my life over the past year. 2006 seemed to be a pretty dam good year for me. Yeh its had its hard times but it has has so many highs. Also sitting here thinking, I have changed alot as a person too, in the summer I was scared of changing, not sure if I was ready to let the old me go. But now I'm so glad I did. I now have alot more up days than down, I no longer care what other people think of me, I have accepted me at long last, I have made peace with the people who have hurt me most, but I also relaised that sometimes the smallest descions that we make really can have the biggest impact.

Anyways moving on. I am getting a tattoo!! Well when I'm legally old enough. So in 11 months I shall be getting off a flight from amsterdam after the most wonderful 4 days there and then be heading into Belfast to get a butterfly tattoo. I am uber excited. Dad thinks I will change my mind on the tattoo, it took mum 6 months to decide on hers. But you know when you see something and just know? Well yeh it's pretty much like that. A friend showed me some pics last night and I fell in love with one. It's really pretty and also adds another meaning to the tattoo. I want a tattoo that means something, not just something to look nice. However when I try and explain the meanings I sound like a rambling idiot (thanks dad!) so I won't even try but they are good meanings and I like them so yay for tattooness in a year.

Bar all that not much else to report. We took down our christmas decorations today. I have refused to let the pink tree in my room and have not left it alone for them to kidnap it. Poor tree! I will glue the tree to my room should I have too it is not going anywhere!!

Anyways happy new year :D:D
Love and cuddles
xxx