Clinical Justification

Well after clinic today I'm feeling oddly happier and more justified in how poo I've been feeling, I always worry that I'm being a hypochondriac and that I'm not as bad as I think I am, but actually it turns out I'm kinda of worse than I'd suspected.

Lung function was a rather vile 0.95 otherwise known as 23% eek....and my FVC was 1.45 or 30%, last time they were 31% and 48% and I wasn't that great then either. My oxygen levels were 89% - 90% which is bad as they put you on oxygen at about 92% - 90% depending on how understanding the doctor at the time is... this is the main reason for wanting to admit me, coupled with the very poor air entry into my poor little naughty lungs.

My weight is also down which I'm utterly mystified by, and actually quite annoyed about as I've been making an effort to eat more and do my feed, ever since that post I made a while back about being under-weight, it is also a worry as it indicates there could be a problem with my blood sugars (ie. diabetes) and so I may have to start doing insulin again. It's not that bad I had it when pregnant but it smells and I don't overly enjoy stabbing myself, I also worry about giving myself the wrong dose and putting myself in a coma, unlikely I know but it's scary stuff when you aren't used to it.

Iike I said at the start it sounds odd but in a way I am glad that I am actually ill and not just going mad, it's so easy to loose track of how well/unwell you are when you are going over and over the things you can't do, and the trips you didn't make in your head and trying to wiegh up if you were just being lazy and unfit or if you are genuinely too unwell.

I'm not sure what they are going to do this admission, I really hope it goes better than the last few I've had. I really hope they get to the bottom of this asthma business swiftly and do somethng about it and don't just faff which is a real risk when tackling things that are slightly uncertain. I also want to make sure that I'm put on a long term sustainable treatment for it, because whack-loads of steroids is not a good option in my book, and if that means we have to go through every asthma drug on the market then so be it.

So all in all it was a rather dire clinic appointment and not too suprisingly they have decided to admit me, so I've come home to pack, play one last game of reversi with Prince Adme Bogmulia Belkarty Lord Of The Reversi Bog and then I'm off for the forseeable future....let's hope Luke and Edward survive my absence :o(

See you when I'm home piglets xox

Pari-Neb Poster boy!

Not done too much today as we are off to the duck-race tomorrow. I mostly just laid about and slept a lot, I did a bit of knitting and took a lot of Movicol and Gastrograffin as my stomach is blocked, hopefully it will clear before tomorrow though as I doubt there are many loos along the race-course.

In the evening I played a few more games of reversi with Adme, we are both so badly addicted to it at the moment, only sadly he has now cottoned on how to play and so he keeps beating me.

Luke and Edward have both been too gorgeous for words....Edward especially seems to think he is going to be the next Pari-neb poster boy haha!

Poppy Puppy Sitting

Some band are playing somewhere in the world and so once again it befell me to go and dog sit for the rents. Sadly not long after I went up last time little Bertie had to be put to sleep as he was just not getting any better, however he has since been replaced by Poppy the puppy soon to be joined by Carmen from Battersea.

The run up wasn't too bad, apart from the bit where my i-pod played 'Season's End' the first Marillion song I ever sang to Edward when he was just a few days old causing me to burst into tears! Alex, my brother, and his chum Tom picked me up from the station and we went and collected the sewing machine I won on ebay for a stunning £5! As I suspected, given its age, it is hideously heavy and I began to plot how on earth to get it home.

We then went to the supermarket and got some nice easy microwave food and a few other snacks including some rather scrummy jammy dodger bars which my friend Jo raves about all the time.

When we got in Poppy was terribly over excited and got caught between saying enthusiastic bitey jumpy hellos and piddling so opted for both at the same time....nice! After we'd sorted her out we made nachos and cheese and pizza and all headed out into the garden where we proceeded to stuff our faces and play with the pooch.

Late afternoon as it started to cloud over we headed inside, and I went for a nap. Not long after Alex got a call from his work (who technically he'd just worked his last shift for) and so he went off to that leaving Poppy in with me. She thought it was a fantastic opportunity to eat the contents of the guitar room, rather boringly on my part, I didn't agree and so took her back downstairs to the lounge where I proceeded to vegetate.

Alex eventually got home and we watched lots of youtube stuff together including a truly hilarious re-working of the Nickleback track 'Rockstar' it is too all intent and purposes the sequel titled 'Popstar'



I then headed to bed as my nap had been rather short-lived and puppy filled!

Saturday we both woke up around 7.30, I sorted the puppy while Alex got ready to go to Reading Festival with his girlie, it was nice though as we got the chance to eat breakfast together before he headed off.

The rest of the day was rather boring on the whole, I was really tired and the house was so messy and dirty it made my asthma really bad so I didn't feel well enough to move far without ending up gasping. So I read FHM and watched lots of really bad TV most of which I'm too ashamed to even name, however come the afternoon the x-factor marathon began and so I watched that and bitched about all the crazy loons with my sister on msn as she watched it, though she kept going off to the loo and to get food and stuff and so kept getting out of sync!

I also chatted with my chum Nick who I haven't spoken to for ages which was really awesome as though we often say 'hi' on msn we hardly ever have a proper conversation as we've both got a bit lazy, and I'm always distracted, I also have less to say these days as my life is happy and I'm content, sad that, you'd think I'd have more to say than when I was miserable.

Eventually I headed up to bed and took Poppy with me as she's not used to sleeping on her own yet. She had a really mad few minutes when she first got upstairs literally bouncing off the walls, but once the light was off she soon settled down. Overall though I didn't sleep well that night as I was so paranoid about her peeing on the new carpet also she kept waking and moving about and trying to cuddle my head.

At around 5am she finally woke up properly and started pawing me and the door so I took her out for a wee, and gave her some food and water. I then left her in the kitchen hoping it wouldn't be too weird for her as I figured it would just be like being left there when everyone goes off to work, as I REALLY needed more sleep as I was feeling so ill and it was so early. At about nine I woke to her whining so went down and let her out. She had attacked a plant and spread that all over the floor and more worryingly turned the oven on.... I was just SO glad it wasn't the hob as my parents have a huge gas range cooker, which like every other surface in their house also serves as a dumping ground for crap, if she'd hit the hob rather than the oven god knows what would have happened!

I cleaned up the murdered plant and we went back in the lounge and again vegetated till Alex got home with Emma and he then took me to the station, he helped me onto the train with the sewing machine so I didn't have to carry it far.

I chatted with a nice lady on the train who even offered me a lift home, however I didn't want to hold her up as I knew I was going to be slow and that I'd need a trolley for the machine. So when we arrived we said our goodbyes and headed our separate ways. When I got in I went straight on my bird and then had a sleep with some Oxygen for a few hours till I got woken to the delightful sound of Edward screaming his head off!!

It turned out he'd decided to remove his nappy and smear himself in poo while Luke wasn't looking, and then had the cheek to take objection to being hosed down.

While I was gone the boys had an ok time, apparently Edward wasn't too whingey which he often is when I'm gone Luke also used the re-usable nappies, I hoped this was a sign he was finally converting, but sadly no, he just could not be arsed to go to the shop for Pampers. Edward is pretty much mobile now as he's worked out how to pull himself along on his belly aided a little by his legs, and he kept crawling round and trying to poke his fingers into Luke's computer....oh dear we knew this day would come.

Unforgiveable Apathy

I've been SO lazy today, and I haven't really even felt guilty about it, I just cannot be bothered to do anything even though there is plenty that needs doing round the house.


Apart from looking after Edward and myself today I have done almost nothing other than vegetate on-line and in-front of the TV. In the morning I did speak to a journalist on the phone, she appealed for people with baby stories on my birth-club and I put us forward as I thought we'd make a good story and I know that the magazines can pay quite well, I'm also hoping we may get a nice family photo-shoot out of it.


Mostly I think I'm recovering from yesterday and preparing myself for tomorrow's trip to Reading to see Mr Chris.... I shall leave you now with many beautiful photos of my gorgeous gorgeous boys, I have probably put too many similar ones up, but they are just so heart-warming I can't choose between them :o)

Edward casting magic spells....we suspect 'summon milk'

I'm telling you Daddy that IS the way it's cast!

Oh Daddy you're so funny!!

BUNDLE!!!

You've got to have Faith

I sell this pretty baby to you pretty lady... I give you good price...free dribble!

We had a chilled out morning Edward and I had a lovely breakfast together, he did really well feeding himself. I finally managed to do the washing today and Luke did the kitchen all good.

In the afternoon Faith, a friend of mine from uni came over and we had a good girlie gossip and cuddled Edward, she was amazed by how much he had grown and how much more aware and interactive he is now compared to when we went for a picnic back at the start of the summer. She has also (foolishly) added herself enthusiastically to our list of babysitters, hurrah! So hopefully she is going to watch him one afternoon in a week or so's time so Luke and I can go and see The Dark Knight at the I-max cinema.

In the evening all three of us cuddled up and watched more Trigun, I'm loving it more and more, Vash is so awesome, he reminds me alot of Luke :o) The best bit was when Edward decided to grab Luke's face so he couldn't turn his head and 'forced' him to keep watching!! Hehe!!

I love my boys and I love my life, I am a lucky lucky girl :o)

Simple Measures

Edward the teaspoon

Daddy the serving spoon

Mummy the desert spoon

Today has been a MUCH better day, we've all spent lots of time cuddling and playing together, we also all watched 'Hell Boy' together cuddled on the sofa. Edward has been in a much better mood, I'm not sure if it's because his teeth hurt less, because he had a better nights sleep,or what, but it's been lovely to have my happy content little baby back, I've really missed him.

I've felt a little better today, I'm not sure how much of it's physical and how much is mental, as I still wasn't able to get all the things done I wanted to, but I think I was just in a better frame of mind and was more chilled and accepting...it can always be done tomorrow!

This morning Edward's new keyboard arrived, it's dribble proof, 'key-removing-srunchy-finger-proof' and can be dunked in the sink when it becomes sticky and disgusting!! Edward and I had a bit of a play when it first arrived, but the serious playing began when Luke woke up....my little programmers :o)

Exhausted and Incabable...

... that's how I feel today, it is very depressing and upsetting. I was meant to take Edward to be weighed and measured today as I haven't been for ages and it needs to be done, I also have a few questions I want to ask the health visitor.

There are a combination of factors I think that are making me feel unwell. My chest is obviously not great, and I'm not clearing well during physio still, however I don't think I have a raging infection and Luke agrees as I tend to smell different when I do. I think my weight is playing a major factor, I don't know how little I actually weigh at the moment, which is naughty of me as I've been supposed to be making an effort to put on weight, but I'm struggling. The stupid thing is if I do my feed the weight would go on without any problems, but I just keep not doing it, there are reasons for this.

The first and most obvious is just sheer laziness and not being bothered with all the faff of setting it up each night and taking it down each morning, however that plays a relatively small part as I know full well I can ask Luke to get it for me.

The second reason is exhaustion, I'm so tired and desperate to get a good nights sleep I am reluctant to hook up my pump as it frequently alarms in the night, I also worry constantly about it leaking, and will often wake with a start when I lie on the cold tube thinking it has disconnected.

Thirdly I worry about getting tummy ache and feeling bloated, it is a lot of milk and a big strain on my digestion which is really not working well at all at the moment. It's hard to motivate myself to do something I know is going to give me tummy ache.

Finally since my pregnancy I have had some very bizzare issues relating to body confidence. It is VERY unlike me and I can't really understand why I've suddenly started having problems with this aspect of self-confidence, I assume it must be some strange consequence of the hormones and perhaps a subconscious adjustment to my new identity as a mother. I know I'm not fat, I know I can easily be about 55kg before I get fat (I suspect at the moment I'm more like 45/48jg) however any weight I put on instantly makes me feel really fat. I think mentally I could overcome this if it wasn't for the fact that the feed makes my tummy bloated a lot of the time, and so I get a really fat lower belly, which looks even worse at the moment as I'm so thin. I know it's silly and shallow but it's how I feel and I'm struggling to overcome it constructively.

I think the knowledge that if I did do my feed the weight would pile on without problems (aside from the ones mentioned here) is almost a downside as it makes me complacent which I shouldn't be as a high weight is a good safety cushion to have.

Today has just been ridiculous, the only reason I managed to do what I did (namely tidy the bedroom and make the bed) is because I bought this lovely new bedding for Luke and I ages ago but we have been waiting for us both to be here, and for us to have the house to ourselves before we put it on. I wanted to get it done as I wanted it to be a nice romantic surprise for him when he got home.

However I wanted to do so much more, there were some lovely ideas I had about getting some chocolate buttons for us to eat together. I also had some other things I REALLY needed to do today such as put in my prescription, getting Edward measured as I said earlier, as well as taking him swimming, It was so frustrating to know I just couldn't do it.

I started to get quiet upset as I was just so exhausted, I just did a few tiny bits and then had to lay on the bed with Edward for about half an hour despite having had a lie-in this morning (after sorting Edward first thing). This has been going on all of the last week or so, I have frequently been having to nap in the day, and even on days I haven't actually had a nap I've seriously thought about it or had to have a bit of a lay down and a rest, this is despite having done hardly anything really...today the cumulation of it all caught up with me.

It makes me worry about what kind of mother I'm going to be to Edward and what kind of girl-friend I am to Luke as I'm not that nice when I'm tired, I get grumpy and impatient. I know I haven't been very good with Edward the last few days when really he needed me to be understanding. I am also really stressing about uni, I just keep thinking if I'm this tired when I'm doing nothing, how am I going to cope with two mornings a week at uni.

I then think that part of the reason I've become so weak and pathetic is exactly because I've done nothing for over a year. Yes I have a bunch of baby activities lined up I could go to weekly, a bunch of friends I want to go visit, as well as ideas for things Luke and I could go out and do together, but they are all optional, so the minute I feel a bit feeble it's easy to bail out, there is nothing to push me and force me to go, which I don't think is a good thing, I think I need that push.

*sigh*

I don't know how much of this melancholy stems from a conversation I had with a friend of mine last night about transplants. She had one a few years ago and now has a lung function of 80%. I would love to be that well again, to be that free again, it is so frustrating and imprisoning to be this ill all the time. I just want a break from it, just to have a few weeks of being well so I could get on and go out and do all the stuff I keep putting off because I feel to tired and unwell. I know I shouldn't wish myself to be unwell enough to need a transplant, but hovering just above the boderline where my quality of life is questionable, makes me kind of wish I could just have one, get it over and done with, and get on with living.

Anyway...

Luke took Fred home today, it was lovely having him here, it was so sweet to see him playing with Edward who he adores, it was also nice to see Luke having fun playing with his little brother.

I really enjoyed having the house to myself, it's such a rare thing as Luke hardly ever goes out without me, and if he does it's usually just to pop to the shops, it's never for very long. So it was a treat especially after it's been so manic here recently with all sorts of people coming and going, it was nice to have my nice quiet house back to myself.

Even more than the space though I enjoyed the anticipation of expecting Luke to come home to me, it may sound mad but I think it says a lot about a relationship if you miss the person you love and really look forward to seeing them again when you are apart, even if it is only just for an afternoon :o)

Edward checking out the newly made bed!

Locked Out!!

It's been a rather lazy few days since I got back from the wedding, really I have lots to do as the house is a tip and there's hardly any puree left in the freezer but I've just been pretty tired out.

Yesterday I literally did nothing but watch i-player and TV and generally laze about, I didn't even cook dinner we got a take-away hehe!

Today hasn't really been any better, I've written a few e-mails to people I've meant to write to for ages. I put a bit of washing on though I doubt it's going to get hung up today haha!

We finally headed out to buy some food early evening as we'd pretty much run out, we walked out the flat, Luke pulled the door shut, and as the lock clicked we suddenly realised neither of us had keys or our phones! We tried going down to see if the porters had a spare set, which they didn't. We stood in the street for a bit panicking over what to do, we considered rushing up to the estate agents to see if they were still open and if they had a set, obviously couldn't phone them as we didn't have our phones. We also considered Luke shimmying up the drainpipe though neither of us were keen on that plan. Thankfully just then our favourite porter walked past and I asked him if by any chance he had a ladder, he did and rushed off to get it for us. A few minutes later Luke was up that like a monkey and in through the window, I wish I'd had my camera as the sight of his legs disappearing through the window was hilarious!!

After that drama we finally headed off to the supermarket, got round relatively quickly, and I even managed to quite accurately guess how much we'd spent before it went through the till. Poor Luke and Fred nearly died on the way home carrying it all though as we got lots of heavy veggies and meat!

When we got in I fed Edward while Luke started dinner. Then Uncle Fred and I gave Edward a bath. Luke then fed him his milk and put him to bed while I cooked the dinner namely very lazy, but very tasty nachos and cheese :o)

A VERY English Country Wedding

Edward looking SO impressed with the whole camping gig!!

This was as much a weekend away with my family as it was a trip to Fleur's wedding, our only chance this summer to all spend time together in the glorious Crossland caravan.

Edward-Tedward and I headed over late morning, the trip wasn't too eventful and thankfully we managed to get on a fast train, though annoyingly it had really narrow doorways so there was a rather messy shoving moment as I rammed Edward onto the train!

Alex then picked us up and we headed to TESCO's to get food and nappies for Edward as they had been to heavy and bulky to bring with us. We then headed out to Mothercare and Next. Mothercare had sadly shut down though actually it turned out to be a good thing as Mummy had already bought the cot I meant to buy and just forgotten about it! We went into Next to get Alex a tie, and found a nice grey one with purple stripes that went with his shirt, the customer service was appalling though and what few staff there were there were all half asleep and so it took about three hours to get through the till!

We then headed home where Daddy was already waiting for us. We chilled for a bit killing time before Mummy was due to finish work, we then shoved the last few things in the Landrover and headed over, we got a call from Mummy just as we were leaving to say the person she was caring for had just had a fit and so she would be late. Actually as it worked out we didn't have to wait for her for too long, and I don't think it made much of a difference to the traffic which was relatively clear all the way, well at least I think it was I was actually asleep most of the journey, despite having major chest pains that I thought were going to land me in hospital :o(

When we got to the site I waved rather feebly out of the car at people before hiding in the bed with Edward and going to sleep, Grandmummy did all his bits for me as I was feeling too weak and in too much pain. That night I had a really high temperature but mostly slept through it, and Edward was relatively good and settled though did wake up quite early.

The day of the wedding we woke early and had a bit of breakfast, there was lots of rushing too and fro, and grumping from most parties. Edward and I kept a low profile and Alex straightened my hair while I did my neb. Eventually it was time to go and we all set off to the church where there were quite a few people already there. I thought we were all going in and so went on ahead in to the church itself (which was very small and sweet and beautiful) One of Simon's family greeted Edward and I as we entered and grinning at Edward said 'ooo I do hope he causes a ruckuss!' I foolishly assured him Edward would be good and hopefully not cause too much noise, though admitted I was under instruction from Fleur to pinch him so he'd cry as she wanted a traditional crying baby!


From almost the moment we sat down Edward started to agitate, I fed him milk, I gave him food I gave him cuddles, I sang him songs, but none of it made any difference he just fussed and moaned and threatened to cry the whole time. My hat kept falling over my eyes and my hair was so long it kept getting it the way!! All in all a bit of a quiet nightmare was going on in our little corner as the ceremony went on thankfully blissfully unaware. I did manage to see most of the important bits and it was truly lovely, however I feel I am now truly a mummy as I have experienced the 'baby at wedding' scenario, for those of you not 'in the know' it mostly involves singing '10 Little Ducks' to your little bundle of joy whilst your child-hood friend swears the most important vow of her life!!! Kind of surreal, but somehow quite fitting :o)

After the ceremony we headed back to the farm and had some drinks and nibbles on the lawn and set up Edward's new cot/tent so he could have a nap, as he was clearly utterly over tired. Finally after lots of grizzling he fell asleep. I could have quite easily joined him, but instead made do with just watching all the people chatting and all the dogs (who were beautifully dressed up for the occasion) frolick around the croquet lawn!

After a while, and conveniently just as Edward woke up it was time for lunch, so we all headed down to the barn which was beautifully decorated. I must admit my photos of the wedding are a bit non-existent as I was stressing over Edward, however I did take this one, which in many ways I think actually sums it all up rather well...


The dinner was a very scrummy hog-roast the odd off-cuts of which got pilfered and enjoyed thoroughly by the many maurading pooches! I sat with Alex, Edward and Daddy up at the back and we got chatting to some of Fleur's friends from Thailand and America. It was really nice to meet them as Fleur has been away growing up with them all, all these years, it fitted a few pieces into the jigsaw of who she is now for me.

The blushing bride herself :o)

Edward got cuddled by lots of people and stolen by Aunty Shellie and fed Cheesecake, which I think may be slightly better than when he got stolen by Uncle Alex whom I snapped with a very suspicious looking beer bottle!




All in all a very lovely afternoon, though by the end of it I was shattered and so headed off to do my drugs and have a lay down, I also thought Edward needed a bit of peace as he was starting to get a little fractious again despite being clean and fed. Once back at the caravan Edward went to sleep for the night, and after sorting out his bottles for the morning I joined him.

The next morning we all had a nice family breakfast together chatting and laughing which was fun. The whole atmosphere was much more relaxed now the wedding was over and there wasn't a risk of us missing it! Alex helped Shellie and Simon clear up the barn though as I wasn't going to be much help I stayed at the caravan. We then all headed off in a cavalcade to a local pub for a lunch arranged by Fleur and Simon for people who'd come a particularly long way. It was a really tasty affair, Edward had some vegetables whilst sat in a big boy high-chair that we tied him to using Fleur's shawl!


After that we went off to get some petrol for the generator, and picked up a few bits that had been requested and for breakfast the next morning. We dropped them off at the house and then spent the rest of the afternoon together in the caravan chatting before getting an early night. Though looking at this photo of Edward it seems he had a rather more wild time than the rest of us...trail of clothes...empty milk bottle....discarded wine glass!!! Shocking !!!


The next morning we again had tasty breakfast, then packed everything up and got ready to head home. We popped up to the house to say our goodbyes, and so I could have a nose around Fleur and Simon's tiny cute little fairy-tale house, as I took a moment to peek out of the window however I was stabbed in the foot by a hideous wasp/hornet who stung me so badly he actually drew blood!! Up to that point I'd been feeling so smug about not having been stung, especially as Shellie had been stung on the bottom three times, and Fleur's Simon had, had to go to A&E having swallowed a wasp...clearly I was not meant to leave there without one though!

The drive home was uneventful but painful due to my injury. Once home I had a nap with Edward, Daddy watched the Grand Prix, Alex went to work and poor old Mummy scrubbed out the caravan. Once Alex came home he took me to get a burger as I had terrible cravings for one, then we watched Scrapheap Drag Racing before all getting a reasonably early night.

This morning I got woken up early again by his Lordship whom I dutifully cleaned and fed, I then packed up our stuff as I wasn't sure if we were going in early with Daddy to the office. Actually in the end he went in with Alex and so I got a chance to have a bit of a lay down before Mummy and I had to go into Bedford.

I went to my solicitors and got the final bits of my divorce papers settled.... about two years after having actually got divorced! Then we picked up Daddy and got the train to London. We parted ways at St. Pancras as they were off to Battersea to see an orphaned Black Russian called Carmen. I headed home and fell into bed and have barely been out of it since....all in all a long weekend full of oak trees, sunshine and family :o)

Greatham Family Picnic!

Thursday afternoon I made two different types of Thai marinade one I'd used before and one I found as a video recipe on a fantastic site called video-jug.

Friday morning before going out with Fleur and Shellie shopping I made some cakes ready for the picnic, I made cherry and coconut cakes and plain fairy cakes, I had wanted to make them butterfly cakes but I realized it wasn't practical to transport them that way. Friday afternoon I made Mexican Pastillos which are a sort of biscuit served at traditional Mexican weddings, we weren't really celebrating a wedding of any kind but it's a recipe I've wanted to try out for ages and so this was a good opportunity, they were quite nice but not what I'd been hoping for.

Late Friday after the worst of the pollen had settled we headed down to Greatham and arrived to find everyone sat out on the benches chatting and eating, we of course sat down and joined in. It was particulalrly lovely to spend time staring at the stars spotting shooters and lost satellites, i do miss that under the orange glow of London Town.

Saturday we got woken early by Fred trampling about the house excitedly however managed to get back to sleep and have a pretty good lie in as Edward was tired out from all his adventures the day before. I then went downstairs to find it full of people preparing food and so got going on my marinades, which didn't take too long as it mostly just involved smothering the meat in them and shoving it in the oven for a guess period of cooking time!


Luke had taken Edward out into the garden on his playmat, I went and sat out with him for a little while and Luke helped manhandle things like benches down to the picnic area. I then had to go and do my nebs and physio. By the time I'd finished that it was about kicking off time for the picnic hurrah!!

Food glorious food!!

Everyone had made really tasty things, someone in particular had made an exceptionally nice rice which I ate lots of, even little Edward joined in and had some pitta bread and tennis balls!



This was the first time Edward had met most of the family and it was really lovely how many people came over to admire him and congratulate us, I don't know if Luke really took it in as he is paranoid they all look down on him, but they all seemed sincere to me and genuinely pleased to welcome a new little member into the family. Edward of course lapped up the attention especially when it came from Harriet who is his favourite girlfriend!


There was a tennis tournament organised by Camilla which lots of people took part in including Fred and Luke, neither of them did well but they both had fun, though afterwards Luke felt utterly awful and had to go and lay down for most of the rest of the afternoon. The combination of the overdose of hayfever meds, tennis and heat got the better of him :o(



The picnic went on all afternoon though Edward and I had a bit of a nap up at the house half way through as it was all a bit much!

That evening was again lovely and chilled out, and I got to do lots of tidying in the kitchen which made me feel better as I'd felt guilty for skipping off earlier after having just done my bit, not that I could have done much if I'd stayed as there were so many people milling about.

Sunday morning Edward and I spent some time down at the pool with Thea, Harriet and Shambala though not too long as Luke decided it was best to head home as he was still feeling really bad and it was rubbish sitting inside sleeping while everyone else was outside. Although I would have liked to sunbathe a bit more I didn't mind too much as I know the instinct to 'crawl home when feeling crap' all too well.

It was a gorgeous sun-soaked weekend and I can't wait for our long stay later in the summer, I just hope it's as sunny so that Thea and I can catch some rays with the little sun-worshiping baby of gorgeousness :o)

Spring...well Summer Clean!

The house has been a bit of a mess recently and in need of a good clean. It's quite hard to do as it's physically demanding and so time consuming, so it's taken me a while to get around to doing it.

Last week I cleaned the bathroom and oven, today I tidied most of the house including tackling the piles of boxes in Edward's room, really there is a limit to how much I can do without selling stuff on E-bay which is my plan, but that is going to be a long day of sorting clothes into lots and writing the descriptions, not to mention taking the photos, working out postage and finally uploading them all onto said auction site!

Luke did his bit and did the hoovering which I find too difficult, he also did the windows in the lounge and our bedroom. It is unbelievable how different and how lovely it looks in comparison, the whole room now feels so much lighter and more airy which is a major bonus when the temperature and humidity is so high.

Edward had a good day watching us he is getting to the point now that he is able to sit in his Winne The Pooh ring, though he needs more practice. He was particularly helpful when it came to the washing and he helped me sort it out and hang it all up :o)

A Lovely Family Day

Well as the title suggests today has been a really lovely family day, it started out with us all having cuddles in the bed this morning which we haven't done much since we moved, that was really fun and lovely though sadly I missed getting a photo of Luke and Edward playing as they looked SO cute together.

After yummy lunch of chicken pie and rice pudding for Edward, and bacon sandwiches and mushrooms for the parents we decided to be brave and risk going to the park, somewhere we tend to avoid due to Luke's horrid evil hay-fever. I think we were out for about half an hour, we mooched down to the Serpentine and had ice-creams than mooched back via the post-box so I could post my letter for 'my' Postpal. Luke was very itchy and it wasn't entirely pleasant for him but I was really grateful that he made such an effort for us all and even he agreed that a short walk like that was bearable. It makes me so sad it has to be like that and that it can't just be a totally enjoyable experience but it is better than nothing and I'm very grateful to him :o)

I then had to go to the dentist, she took some x-rays and wanted to do a filling. I'm terrible when it comes to brushing my teeth, I don't know why but I really really hate it with a passion and always have, so it is no surprise I need work done, I'm trying to be sensible and take advantage of my maternity certificate before it runs out so I can get it done free! However I was really frightened I tried to stay calm and do deep breaths but I was still panicky. In the end she decided it was best to refer me to have it done under sedation at the hospital, she said if I was a normal patient she would have carried on but due to my steroids she was worried that I may go into some sort of hypoglycemic shock, I felt so guilty and pathetic and like I'd wasted her time but she was very nice about it. I also think she was worried about me passing out and not knowing how to deal with me and the forms she'd have to fill in if she had to call an ambulance and so decided to er on the side of caution, as it means I get out of having it done for a while longer I'm not complaining!

Edward has been a pretty good boy overall today, much more settled than yesterday, though he has got into the habit of making a very annoying moaning noise, he has also taken to doing fake coughs which are really quite funny especially as he often smiles and looks terribly pleased with himself after he's done one...obviously been watching me at physio time a little too closely :o)

You can just make out Edward's little butterfly that his friend Abi sent him in this one!

Postpals

I've had a rather flat week, after coming home from Bertie sitting I felt pretty rough for most of the week and the weather wasn't that great either so I didn't feel very inspired to go out and do anything. I was kind of annoyed with myself about that as before my admission I'd done so well at finding activities to go and do as well as making friends with my various mummy-chummys.

I think part of the problem was me worrying about university, I had spoken to my tutor about it and she had given me the time-table. After my initial cockiness that I would be fine to go back full time I suddenly came to the rather crushing realization there is just no way I am capable of that. Also seeing the amount of hours Edward would have to spend at nursery written down in black and white made me accept finally that it is not what I want for him. Though I don't want my life to go on hold and get stuck as a stay-at-home-mum I also don't want Edward in nursery from 8.30-6.30 at least three days a week it's just not fair on him. If he was a bit more mobile and capable of occupying himself I wouldn't mind, but at the moment he is just a bit too vulnerable, though I know it works for some people and I'm sure the nursery will take good care of him, that is just a bit too much.

All that said it still really got me down as it made me feel pretty feeble and the prospect of my degree going on for another four years is not one I relish. However rather than moping about I was proactive and booked a meeting with a student adviser. What we hadn't previously realized is that Luke is still entitled to a full student loan and childcare allowance for this year, we thought because he was re-sitting modules from his 2nd year he'd get nothing. It has totally changed the situation as it now means we can afford for me to go part time. We are going to use Luke's loan to pay for my fees and his childcare will cover Edward for the few hours that both of us are at university which hopefully won't be too many in a week. That really cheered me up, but I'm still quite panicky about whether I'm going to cope or not, a worry that has been amplified by the fact I've had to have naps during the day most days in the last week, I'm sure once I'm there I will be fine especially now we've found a way for me to go part time.

Despite that good news today has been a really quite rubbish day, I've been asleep almost as much as Edward and when I have been awake I've been really bored but not really had enough energy to do much about it except trawl through BBC i-player which is my new favorite toy!

Then in the evening I was doing my usual peek through the blogs I follow regularly and on little William's blog his mum mentioned that he had been given a Chemo duck by a charity called Postpals as well as attending a party arranged by them. The duck has undergone various surgeries so that he has the same sorts of tubes and implants as William which I think is a fantastic idea.

Postpals main aim though is to get people to write letters and send little presents to children who are stuck in hospital a lot and having to put up with tons of treatments and generally feeling rubbish, and in a really fantastic move the charity have also set out to support the siblings of the poorly children to make sure they get some attention too which I think is ever so important as far too often they get forgotten about when in some ways it is almost probably harder for them having to watch their brother or sister being ill all the time and having to deal with the worry and lack of attention, I don't think it should ever be underestimated how hard this can be.

I also know how isolating being unwell can be, it's hard to get out and do things and see people, and often you don't really even feel like seeing people as it takes too much energy. I really understood how much these letters could mean to all these people stuck in smelly hospital as I know just how they feel and know how much it can really make your day, or even your week actually just to get one letter or one visit. My darling friend Raj is always excellent at visiting me in hospital and often brings me little things such as muffins or white peaches, and even though they are just little things the thought behind them always touches me so much and I really savour eating them because they are all the more special :o)

It took me a long time to pick who to write to as I could have happily written to all the people on there all their siblings and all their parents. However in the end I chose a girl called Laura as she reminded me that there is always someone in a worse situation than me and that I shouldn't mope about feeling sorry for myself! I wrote a long letter that kept me occupied for ages, I told her a little about Chinese Medicine Theory regarding the role of Kidneys in the body as I thought she may find it interesting I enjoyed thinking about it and even got out my old notes to make sure I got the details right. I hope she likes it and isn't just bored by my inane waffle she sounds like a really awesome young lady :o)

I really urge everyone to go to the Postpals site, choose a person and write a letter or send a card, it won't take much time or cost much money and could put a smile on a very brave little persons face so give it a go :o)

Most of this week Luke and I have sat down together and watched a few episodes of House last thing at night. It is really excellent even if the plot structure is a little predictable. It is actually part of the reason we named Edward what we did as we watched so much of it while I was pregnant and both thought it was so awesome. We liked the name Hugh, which led to us thinking Hugh Laurie, which led to Laurence which is Edward's middle name, it was also one of the names suggested by the highly fantastic Great Aunty Mellie.

The pregnancy and birth coupled with all the long admissions and me feeling tired and grumpy has put something of a strain on our relationship, not in a disastrous way, but enough that we need to put a little more work and effort in on each other, something that is too easy to miss out between all the Edward-fussing and physio. These late night evenings have done a lot to make us feel closer it's been really lovely.

We are planning to go to Salsa classes together, I've looked some up, they sound a bit intimidating but I just have to tell myself that half the people there will be just as rubbish as me, and that no one is going to be laughing at me more than I'm going to be laughing at myself. It looks good fun and pretty sexy and would be a really nice grown-up thing for Luke and I to do together, I also think it will be a good confidence booster which is a major bonus for Luke :o)

In other news Edward was seven months old today!!!!

Hayfever Trials and the Listening Post

So far this week has been a little apathetic, I have sorted lots of paperwork which is never ending it seems, however I haven't done much so it was nice to finally get up and go and do something.

Luke took part in a hayfever trial today, they took blood and did some skin-prick tests to assess what he is allergic to. Sadly he reacted to too many different allergens to be able to fully participate in the trial however the woman did give us the name of a doctor who she suggested we request a referral to, she said that Luke should be able to have immunotherapy, yes that would be the same immunotherapy the GP told us was outlawed due to excessive deaths!!

Though of course his hayfever is 'just hayfever' and not a totally life-inhibiting condition that means the poor man can rarely leave the house for more than an hour or so at the time or the condition that prevents him being able to take his son to the park. Fair enough a bit of a runny nose and itchy eyes is nothing, but Luke has severe and chronic hayfever, antihistamines don't work and he's not going to grow out of it, so it was a relief to finally see someone who understood and treated it like the serious condition it actually is.

As we were over that side of town, and the large quantity of rain in the past few days has dropped the pollen count to bearable we headed to the science museum which we have been planning to go to for months. It was fantastic fun to mooch around though of course Edward went to sleep literally the second we walked through the front door. Seriously that child I try to expand his mind and he just sleeps... it was like his first trip to the park all over again!!

By far the best thing we saw, in my opinion, and a big part of the reason I wanted to go, was to see an art instillation called 'The Listening Post' it wasn't entirely what I had expected and was actually better than I thought it was going to be.

I consider myself to be very much a child of the 21st century, the few weeks after we first moved and didn't have internet I felt genuinely lost and frustrated, it is such a massive part of my life, I have spent so much of my life enveloped in it. It keeps me in touch with my friends and my family, it has given me a platform and audience to write to, and provides such an utterly bottomless and magical wealth of information that for all it's dark corners and downsides I wouldn't be without it for a second.

It is a strange place, an adjunct to the real world, yet all of it somehow eventually down a long wire comes back to the real world, I truly believe the content of the internet to be one of the greatest single achievements of the human race. It is effectively a world created from the human mind, so often I find my body cannot do what my mind dreams of being capable of, in many ways the internet takes me to those places, when I'm too ill to travel to see my friends it takes me to them, it shows me pictures of all the countries I cannot fly to, it teaches me all the things I will not have time to learn, the internet is so utterly without boundaries, it is the eptiome of what we as a race are capable of, it is the eptiome of freedom.

Outside 'The Listening Post' was a quote from a review that called it a 'chapel to humanity' or something similar, I thought it was a very accurate statement. It is an honest, haunting and beautiful summary of what the modern world has become, proffered without judgment. Having walked through halls and halls of weapons it was a relief to see that beneath it all there is still hope, we are just us, just human, nothing more and certainly nothing less.

A/S/L?
23/F/LONDON U?

"Thank God For The Internet"

Just a few photos!

I know this has all got a bit behind as I've been away, I will do a catch up post but will backdate it so make sure you don't miss it.


For now I just wanted to put these pictures up of Edward and Aunty Thea as they are just so gorgeous. She is such a perfect aunty she loves her little nephew so much, in a funny way it makes me feel really proud, both of Thea for being so wonderful, and Edward for being so adorable!


The final photo is from our trip out on Saturday. We had planned to go to Liberty's as Thea had read about it on my blog, however Gay Pride was on and we couldn't cross Regents Street to get to the shop. It didn't matter in the end though as walked down watching the parade which was quite moving in places, especially hearing the cheers for all the military staff who were allowed to wear their uniforms for the first time. Initially I didn't think it was appropriate for them to wear them, but then I decided that it was actually important for them to make their statement, this country is full of all sorts of types of people, and those men and women are as much a part of our society and the forces that defend us as anyone else and it is right that they take pride in what they do especially when you consider they lay their lives on the line for people who hate what they are.

After initially not wanting to walk as far as Regent Street we ended up walking all the way to the South Bank where we had a yummy lunch in Wagamma before having ice-creams. Thea then headed home and we rushed back to ours to make sure we were back in time for the end of Dr Who. Hurray Cathrine Tate is gone, and David Tennant is still alive....all faith is restored!

Hospital Admission

Sadly my photo is a bit boring, I got distracted by the match, but it gives you and idea of what it was like!

Well it was a bit of a varied one this time, I wasn't hugely ill which made a really nice change, I said to the taxi driver who took me over that it made such a nice difference to be going in and knowing I wasn't going to be chained to the oxygen when I got there.

My blows on admission were really good, so good in fact I felt quite guilty for being there. The plan was just for a bog standard 10-14 days of IV's. For the first few days I was in one of the private rooms which was really nice and had a sofa, but I knew it wasn't destined to last so I didn't get too comfortable.

The admission was mixed in it's success, my lung function actually went down, and I didn't feel any better by the end of it, however I didn't feel any worse.

I was lucky enough to take part in a clinical trial investigating the effectiveness of muscular physio on correcting the curvature of my spine and generally mobilizing my rib-cage. It was very interesting to take part it as we chatted about all sorts of complementary therapy concepts while we worked. It made me feel a lot better and straighter and the difference in the measurements was shockingly good, all in all a major success. I just really hope that the trial is a success and the secure funding for regular treatments.

Unfortunately my whole system is always under such strain there is no quick-fix, I need constant maintenance, for years I've felt guilty about my posture, but the physio treating me was very supportive and encouraging. She said although obviously there were things I could do to help myself it is just the natural thing for my body to do, breathing comes before good posture in the body's order of priorities, and I have to say it's a wise subconscious decision .She also said it was partly cultural, partly from a sedate lifestyle, but also when we see other people stood in poor positions sadly we are liable to copy them, the body is kind of lazy like that!

Other things of note that happened...

I went home and cuddled my boys and watched Dr Who, which though not earth-shattering was a lovely thing to do. I really enjoyed the fact they were so close as I could nip home and see them and still participate in Edward's care, I got to feed him, bath him and put him to bed a few times. It is also much nicer to be snuggled on the sofa with Luke at home, than cramped on the bed with nurses and tea-ladies and goodness knows who else coming in my room staring at us.

Finally and most excitingly of all my dear friend Raj managed to get us tickets for center court at Wimbledon!!! I ran a bit late getting there thanks to pharmacy who had managed to send my drugs to the wrong ward, however it wasn't too bad and Raj had made himself useful helping out the wardens directing people towards Wimbledon.

We skipped down towards the courts under clear blue skies and on the hottest day of the year so far, by the time we got there the atmosphere was already buzzing, everyone was mincing about in lovely summer dresses, blazers and straw boaters (which Raj pretended to hate, but secretly I think he was jealous)

We mooched about looking at the courts, watching people warming up, and just generally soaking in the atmosphere, I think everyone was on a high from the gripping Murry match that had taken place the night before all secretly hoping they'd be lucky enough to be part of something equally gripping, and of course the streaming sunshine helped.

Eventually it was getting close to time for the match on center court to begin and so we furnished ourselves with Pims and water and took our seats. We each picked a random unpronounceable girl to back. It was a good match, though it went on for a long time, and sadly right at the end poor Raj came over quite faint and we had to go out so he could recover and so we missed the end!

I then did my IV in the medical room (well finished it off) and so missed most of the Serena Williams match, we came back just in time for the end. What I saw was impressive even from the gods where we were sat you could sense what an intense and powerful woman she is, I'd be quite intimidated if I ever had to face her I think.

It was quite surreal to actually be at center court having seen it for so many years on TV. I really missed having the little purple and green BBC graphics to tell me what was going on score wise and almost hallucinated them into place on several occasions. On the upside it was really interesting to see around the edges of the court and spend more time watching the inter-ball girl/boy politics, though in fairness they were terribly impressive and professional, one girl in particular was incredibly sharp, almost robotic in her movements....we think she has a promising career in the armed forces :o)

We then watched the mens doubles which was very different in style and pretty good, the match went on for a shorter length of time than the first womens match which made following it much easier and more interesting. To end we got to see some of the senior mens doubles, which was more of a comedy act than anything else as they took the mickey out of themselves for being so old, it was quite a nice end after the intensity of the earlier matches.

We didn't stay to the end though as we were a bit bored of being sat inside center court by then, so we went for a last wander round the site, had a mooch round the gift shop, and watched the very impressive junior womens doubles finish off their match. We then wandered down to the train station, we debated getting the bus but decided the £2.50 they wanted to charge was a total swizz, I regretted it a little half way up the very long steep hill, but felt smug once I got to the top.

It was a really magical day and something I'd highly recommend to anyone should they ever get the chance....tick 'thing to do before I die - go to Wimbledon' off my long list :o)

Thankyou Raj

Health Visitors....

I just hate them!! They mean well and they try to help, but overall seem incapable of getting through a thirty minute conversation without saying something either incredibly stupid or incredibly patronizing, usually both at the same time!

Ironically despite my low opinion of their competence I always get very paranoid before they arrive that they may think I'm a terrible mother who isn't coping and that they will try and take my baby away. It's totally unfounded and unlikely to happen but I just can't help worrying so had to spend the morning tidying up and worrying, and secretly being annoyed at Luke for totally unjustified reasons....well apart from that he didn't put the cushion cover back on like I asked him to!!! ( I know the depths of his crimes are quite shocking!!)

The health visitor was actually very sweet, though they almost always are annoyingly, she was very careful to ask lots of questions about how I was coping and checking that I had access to activities and support so that Edward had things to do and so that I wasn't isolated. She gave me some details of a children's center we could go to and suggested that if I felt I needed it I could have someone come round to help out and offer more advice and support on a regular basis. While I'm well I don't feel I need much help as we get along fine, but it's nice to know it's there as from past experience I know how fast it gets hard the second I am unwell. She also suggested a father and baby group she knew of and is going to send me the details, I REALLY can't see Luke going to anything like that as he finds people rather boring however it's good that it's on offer.

We had a bit of chat about the weaning, she wasn't very impressed that I was giving him finger foods as she thought he may choke, obviously you have to be careful but I honestly don't think enough actually goes in for this to be much of a hazard. Overall she seemed to think I should be feeding him more and cutting back his milk, I'm a bit dubious about this as I don't want him to loose weight, and I'd rather take things slowly as we are only about a week in and he's not eating enough variety to cut back, and isn't taking any diary or protein yet, just veggies and fruit. I'm going to continue to stick to the guidelines in the book I got from the library as it seems by far the most sensible thing I've read on the subject.

She then asked to see his red book (this is a thing given to him by the health services to keep records of all his visits to doctors and all his jabs etc.) I laid him on the sofa at the back towards the groove and walked the whole meter across the room to where his book was, only to be told off and that he could roll to his death!! Again obviously you can't leave him laying around especially now he's rolling, but seriously there's no need to get silly and paranoid I'm not going to put my baby in danger for goodness sake...she seemed to think otherwise however and gave me a very informative leaflet about all the terrible dangers in the home such as ovens, glass and plugs...all capable of permanently maiming or killing my child...so all in all a typical health visitor visit.

I spent the rest of the day faffing about, though did finally manage to get the breast pump I hired sent back. I then started feeling really sick and tired, and so went to bed for a nap. It wasn't a particularly good nap as someone was doing some building works or something, upstairs were thumping about and then some woman started having an argument at the top of her voice in the courtyard. Then Luke came in and asked if we were going to the supermarket, I said he could if he wanted and if he did could he get garlic and onions...not long after that I gave up on my nap, and came out to find Luke changing Edward and cursing the reusable nappies bitterly hehe!

I then fed Edward and then cooked our dinner which was really hard to do as I was still feeling really queasy, however it turned out to be well worth it as it was very tasty. Luke thought it was the best pasta bake I've done so far, which though nice of him to say, kind of annoyed me because this was the first time I've used a jar and not just made it up myself. I think next time I try to cook one from scratch I may try using mascarpone as that was in the jar and gave it a nice creamy texture.

Edward and I had a lovely time playing this evening, he was practicing his sitting up and rolling THE CUBE around. I've also been teaching him all week to blow raspberry's and he's coming very close, last night he kept poking out his tongue, I must get a photo of him doing it because his little tongue is so small it's so sweet :o)

I've started making another sling out of the left over fabric, I have all the pieces chopped up and am going to sow it while I'm in hospital. I figured I can hand sow it, give it a try and if it doesn't feel strong enough go over it with a machine next time we visit Greatham.

I really enjoyed giving Edward his last feed of the day, though it did make me quite sad knowing there are so few left to go before I go in and can't do it any more for a while.

Luke and I then went to bed and cuddled and talked for ages, it's always so hard being separated, neither of us really wanted to go to sleep as we both knew it was our last night together for a while. Much as I hate it though, I think it does make us both appreciate each other more and we keep that magic of the simple joy of going to sleep and waking up in each others arms.

Over the weekend...

I had a pretty chilled out weekend. Saturday I floated about not doing much for most of the day as I felt kind of tired. Luke and Karolina slept in till gone 1pm after their late night WOW exploits. I spent the morning trying to find something to do for Fathers Day as well as just looking at general things to do in London for free or very little. In the evening I made a nice dinner with lots of help from Edward, Shellie and Simon came round as they had a party in Camden and so were staying the night with us. It was most amusing as Simon said hello to Edward who though it would be delightful to smear rusk on Simon and his nice party clothes, and when Simone exclaimed 'ew' Edward burst into tears, obviously very distressed that his 'decorating' efforts were not appreciated!

Sunday we had planned to go to a posh restaurant who were doing a special Father's Day lunch, however poor Luke felt so ill with hay-fever that we canceled it in the end. However he did of course still get his lovely card which Edward 'made' me cover in glitter hehe, as well as some hankies with 'Daddy' embroidered on them which I ordered ages ago specially.

I think Luke felt a bit down, a bad combination of hay-fever and his ongoing struggle with being a daddy, that wasn't helped by the fact it was Father's Day. He is a perfectly good and capable daddy and he loves Edward very much, just in typical Luke fashion he constantly thinks he isn't good enough and that he's not ready, as always it just comes down to self belief and self confidence, both of which I'm sure will grow in time.

As Luke wanted to sleep, and we were hungry, we left him to it and went off down the road to the same Thai place Shellie and I went to last time she was here, and yet again had a very scrummy lunch. We then walked across Hyde Park, where we parted ways, Shellie and Simon went off to Victoria to get the train home and Edward and I had a think about what to do. I was going to just go home, but then decided it was such a nice day it seemed a waste to stay inside, and that I was bored of being inside, so we went to the Marylebone Summer Fayre.

I have noticed that I'm almost a bit manic at the moment about 'doing stuff' I think that I'm just so aware that my lung function is really low, and having seen the stories of so many end-stage cf people who just become totally trapped indoors I am desperate to make sure I don't waste the time I have. I'm going to be trapped inside for months if not years capable of doing next-to-nothing, so I feel I should make the most of the freedom I have now, while I'm still lucky enough to have it.

The fayre was very busy and there was lots going on, mostly foodie, Edward particularly liked all the people Salsa dancing in the street so I lifted him out of his buggy so he could get a better look. Overall though it left me feeling a bit bummed out and lonely, as though Edward is fantastic company you can't really chat to him about stuff, or appreciate things on the same level, so we walked home. It did make me look forward even more to this chummy-mummy meet next week, and more determined to be brave and go ahead with it.

That evening Luke and I had a bit of a chat about stuff, as I've been getting a bit frustrated with doing stuff on my own all the time, and him being apathetic about almost everything. His hay-fever, daft as it sounds, is a major obstacle as it just prevents us going outside and all the free stuff is outside really, such as park visiting. He is also painfully shy and not really into going and meeting new people. I'm shy too, but much better at forcing myself to be brave and ignore it, and I REALLY want to make some new chums in London. Though the ones we have are awesome we don't have many, and they are often busy so it would be nice to have more.

Overall it turned out to be quite a constructive conversation and left me feeling a lot better about things. Luke is very sneaky and does things in the middle of the night and never tells me about them...like applying to Google....I wish he would tell me as I always get cross with him for doing nothing and then find out actually he's done loads!!

I will never learn :o)

A lovely day in the sun with Aunty Shellie

I meant to tidy the house this morning but got utterly distracted into planning for my dinner party tomorrow, well I thought it was tomorrow, turns out it's actually next Thursday, but at that point I was still blissfully unaware of this fact and so Edward-Tedward and I headed out into the sunshine to buy in the bits I needed leaving a very poorly Luke sleepily dying of laryngitis at home.

In need of wooden skewers I headed to Woolies, who I also thought, quite correctly, may sell baby sunglasses. After trying on all the ones they had we finally settled on the ones in the above photo, tempting as the Spiderman ones were we thought that at five months old velcro straps were going to be alot better than plastic ones.

The supermarket didn't have everything we needed so we headed up to get the bus to Camden. As we sat waiting Aunty Shellie called to ask if we were still on to meet up for lunch. I'd totally forgotten about it, but said 'of course' and that I'd meet her down by Marble Arch in about 20 minutes time. I nipped home to change Edward and pick up some of his milk then up to Marble Arch where Shellie was waiting.

We decided to go out for lunch and started looking for a nice place round where we were. Nothing really took our fancy, and by that time we were almost level with our flat, so I took Shellie in to see it. She liked it lots, though as we arrived the oxygen man was also there so he gave me my new cylinders which are not liquid booo!!

Mummy called while we were there to ask how Shellie's appointment at the brain hospital had gone. The doctor decided that she just had a very severe type of migraine, (the type that makes you lie bed bound in a dark room for almost 4 months straight!) and that he had a few drugs he could try, however he didn't know why she was getting all of the wierd symptoms that she gets and he can't offer her a follow-up appointment for 8 months even though he would like to see her sooner. Grr it's such frustratingly crap service, it makes me realize how lucky I am being looked after by the Brompton.

After I'd suitably showed off my lovely new (though still very messy) flat we headed out to a nearby Thai place I'd seen in my scout of the area that I did when we moved in. It was VERY tasty and very reasonably priced, the staff were all lovely too and made a big fuss of Edward. He had such a good time that he started to drool!!!


After lunchie munchies we decided to wander down to Hyde Park, which we did, it was very lovely. You just don't realize how big it is, and it's amazing how you can be in the center of the city and yet just see trees, it's fantastic :o) We just both kept exclaiming that we couldn't believe how nice the park was and that it was so close to my house. We eventually came to the lake where we had a nice long sit down, we also had lots of fun looking at the geese and ducks :o)


We then mooched very slowly and in a very lost fashion all the way to Victoria!!! I can't believe how far I walked, but like I said to Shellie seeing Sam waiting for her transplant and tragically not making it combined with my horribly low lung function has made me even more acutely aware that I have very little precious time where I will even have half a chance to wander about as freely as I do now, all too soon I'm going to be tied down to a wheelchair by oxygen tubing permanently, so few and far between as days like today may be I'm going to do my up-most to enjoy them.

Once at Victoria we went to Costa upstairs to get a drink and wait for Simon to finish work. I did wander off for a bit to see if I could buy some milk for Edward as he was getting hungry, but nowhere sold it. Simon then arrived so I sent he and Shellie home, and resumed my original plan to go to Camden and get the last few bits for the meal tomorrow.

While on the bus I got a call from Luke to say the gang were coming round as agreed and when was I going to be back as they were going to be there in 20 minutes. I don't actually remember remotely agreeing they were coming round today haha but then I don't appear to have a good grasp on what I've arranged of late so it's quite possible! I was unfortunately already on the bus to Camden and though I abandoned my plans to go there it meant it took me ages to get back as I had to go a very convoluted route.

The gang were already here by the time I arrived. We spend the rest of the evening chilling and chatting, and ordered some yummy noodles from a place recommended by Vince. Karolina got very excited as Luke helped her with her WOW account so now she can play all summer while she's home in Poland missing Vince, and Rabia entertained us with tales of how she was planning to work in immigration and decline the entry of all Canadians to the country!!

It is most certainly now time for sleepies......goodness knows if my legs will actually still work when I wake up tomorrow!!!