O Tannenbaum

Yo Ho Ho! I think I'm finally feeling the Christmas spirit. Or it could be that I can finally relax now that I've got all the presents. Note to me: next year get all your presents in November. If there is a worse place to be 3 days before Christmas than the Trafford Centre then I don't want to even think about it ;-)

We took Abby to the Stockport plaza yesterday to see Cinderella with Lisa Riley and some unidentified people who may or may not have been from Hollyoakes. It was alright, but it wasn't very faithful to the original story that Abby knows so well, and the guy who plays buttons wasn't as good as Stu Francis who was in a lot of the pantomimes I saw when I was a kid. Anyway, Abby enjoyed it although she did spend most of the performence with her hands over her ears (all the kids were booing and shouting a bit too loudly for her)

Oh yes, and the Christmas tree is now finally up after the holiday delayed it. We (ashamedly) had it delivered after Abby had hand picked it in the garden center. Really, when the revolution comes, I will be first against the wall ;-)

Across the Universe

Oops, I'm supposed to be working but all I can do is read geek blogsites...this one is quite good, the pictures on the left are not much to look at, until you realise what they are. A so-called GRB is formed when two superdense stars collide and form a black hole. The resulting carnage is bright enough to be seen for a few seconds across the universe. The one on the right is GRB080913, which is the most distant GRB ever detected, at a numbing 12.8 billion light years away. In other words, when the star died to create this explosion, the Universe was less than a billion years old… and when it reached Earth, the light from this ancient detonation had been crossing the reaches of space almost 13 billion years, since before the Earth was born, before the Sun formed, before there was even a Milky Way Galaxy. All I can say is wow.

The Annual Bavarian Beer Market

Well, I've been back over a week from holiday and the post-holiday blues are starting to kick in, so I think I'll cheer myself up with some pics of the kids being cute in Egypt! We've also planned a trip to Shanghai next year to visit R's brother so I will need to book some immunisations next month. I was due to get them before Egypt but the GP Nurse got worried when she found out I had CF and basically just deferred and faffed until it was too late. At work it's the Christmas party on Friday, (which will be a bit odd because I've only been there a few months really) followed by meeting some friends at the annual Christmas Bavarian market in Albert Square. They always do great mulled wine and black beer, the trick is to avoid hypothermia whilst sitting outside for several hours in December... ;-)

Sharm El Sheikh

Wow, One weeks holiday is never enough. You and your kids are just beginning to get into it and you have to come all the way back again. It was great, but we were debating whether to go somewhere less ambitious and take the grandparents along for some support looking after the kids. In hindsight, maybe that would have been a better option. Ah well, swings and roundabouts as they say. At least we went somewhere guaranteed to be warm; 28 Degrees Celsius plus and we could afford to go for the all inclusive option - I'm sure I've put on half a stone, my work pants were a real struggle to get on this week.

Sunday - The much feared plane journey. Abby had her own seat for the first time (and hand luggage, her pink-princess case was stuffed with toys and princess activity books) and she loved it. In the end Abby was very good on the five hour flight, it was Oscar who was a bit of a nightmare; wriggling, wailing, and generally being a little monkey, so I ended up having to let him suck on my little finger for large periods of the flight to chill him out -my little finger has not recovered yet, god only knows what it's like for R breast-feeding. The meals were just just a nightmare as Oscar didn't have his own seat, and we had to pass him around and take turns eating. Abby did a big whoop when the plane landed which was just the cutest thing ever and brought tears to R's eyes ;-) Abby was very impressed with the massive hotel lobby and I did play on the fact that it looked a bit like Princess Jasmin's palace from Aladdin, which is one of her favourite films at the moment. Discovered our room had been upgraded to a deluxe family room, which meant Abby had her own room with a choice of two beds. Oscar had to slept in our bed because the cot didn't arrive in our room until the Monday...although Oscar seemed to like being piggy in the middle because he slept through the whole night with only one feed ;-). Got a late dinner the main dining hall, which was then I started to notice the place was full of Russians. Who were a bit rude pushing in, it has to be said.
Monday - The day was mostly spent exploring the massive Grand Azure grounds...four swimming pools, loads of slides (Abby found the slides good but the unheated water a bit cold), beach, and jetty. Abby was a bit overwhelmed by how big the hotel was and had trouble sitting still once the entire day, it was as if she wanted to do everything all at once. Needless to say she was exhausted by about 6 PM and threw a few strops. We met the rep and booked a glass bottomed boat so Abby could see the reef fishes on Wednesday. Food in the main dining hall was good, with plenty of calories on display (!) although not authentic Egyptian, unfortunately. Normal service was resumed with Oscars feeds though and he seemed to wake up every 2 hours for feeds during the night...this is especially tough on R as she has to try and stay awake during the feed whereas I tried to stay awake and usually failed miserably. Breast is best maybe but it is tough for the ladies ;-)

Tuesday - Similar day really, went to the swimming pools, slides, then the beach later on, Abby and R had a walk along the long jetty looking at the fishes, which weren't up to much as the coral near the jetty was completely wiped out. Oscar was a bit whingey and had a bit of a heat rash/eczema, probably just getting acclimatised after the being in cold damp Manchester for his first four months really. Later on Abby discovered the outdoor heated swimming pool and spent a long time in there, which was great.

Wednesday - Took a trip to Ras Mohammed and the glass bottomed yellow submarine boats. It was good, seeing all the fish up close but it did make me itch to go snorkeling, which wasn't really possible with us having to look after two kids. Next holiday... ;-).
We got rudely woken up by a drunk Russian knocking at our door at 3 in the morning! by the smell of him he'd been hammering the cheap vodka all night and was convinced that I was in his room. After sending him away once he turned up at our door again so I called reception and they sent a porter down to get rid of him. Drunkards! harmless enough maybe, but who needs them?

Thursday - Me and Abby went down loads of the tunnel slides - the water was really cold but at the end of the day, it's a great way to wake up in the morning. I should probably add that Abby is really into role playing all her favourite Walt Disney films. Goes along the lines of "You be Dopey" (points at me) "Mummy be the handsome prince, and I'll be Snow White!" Me, just woken up; "Errrr, Ok Abby, I mean Snow White, well I guess I better go down the mine then..." The entire film will then be reenacted for the best part of an hour with me playing the dual role of the dwarves and the wicked queen. Really. We have to get her into amature dramatics, she's born to do it. I was starting to notice I had a *lot* of mosquito bites by now although I never notice the f*ckers when they're doing the biting; don't get me wrong, I would rather it was me than the rest of my family, it's just I had hoped there would be some fringe benefit of having CF like mosquitoes detesting my salty, antibiotic filled blood or something...

Friday - Took a taxi to Nama bay to have a look for some presents. Got accosted by every shop owner on the way into the center of Nama bay, as for some reason we were the only tourists about at 12. What is it they say about mad dogs and Englishmen in the noon day sun? Didn't really buy much in the end as it was mostly tat but it was nice to see the old Sanafir hotel where me and R stayed in Nama bay in 2002; its now a club called Pacha, and the rave capital of Sharm for the hip and trendy. Not sure if it's still a hotel but the funky red bus cafe at the front of the hotel is definitely still there (You can just about see it to the right of this photo.)

Saturday - Last full day at the resort, started off in the heated pool, then went down to the play area with Abby then had a long swim in the kids slide area with Abby she loved it, but we were both freezing by the time we came out and Abby was knackered. I'm very impressed by how confident Abby is in the water (with armbands) the swimming lessons can't be far off (I have no idea how we'll fit it in) Abby was really starting to get into the flow of the holiday now, as opposed to earlier in the week when she seemed to be a bit homesick and a bit thrown by the lack of routine.

Sunday - Spent half the day at the beach and the other half packing for the flight back to Manchester, which we learned was -2 degrees Celsius, Happy days ;-)

Great Inventions of the 21st Centrury

The INeb. It's just an improvement on what we already had, but compared to the small motorboat sound of the compressor neb, for holidays, and for doing nebs whilst looking after a hyperactive 3-year old who is into role-playing Walt Disney films it's a must. I do think it needs "sexing" up though. For starters there's the colour, I mean hospital blue, come on! Lets have it in chrome, or black to go with my shoes or (for the ladies) handbags. The shape could also be smaller and curvier as well. If it was the size of a mobile phone then it would be fantastic.

Here is my drug list for the weeks holiday:

Stomach:
Creon 60/day = 5 tubs
Omeperole 2/day
Lungs:
Flucloxacillin 4 /day
Azithromycin
Rifamplicin 2/ day
Sereride 2 / day
Uniphyllin 2 /day
Colymycin 2 /day
Dnase
General
Multivitamins
Vitamin E
Vitamin K
Calcium Tablets
Dehydration:
Dioralyte
Salt Tablets
Emergency Stomach Blockages:
Kleanprep
Movicol

I haven't had a stomach blockage on holiday yet (touch wood.) but I always take the Kleanprep just in case. Over the years, for me, holidays and a handful of beaten up bags of Kleanprep have become inextricably linked.

Last night I had this intense anxiety dream where I had received a lung transplant but had forgotten my daily dose of anti-rejection pills, and so my new lungs where burning up because they were being rejected. In the dream I was like "Oh my god! I've received this wonderful gift and I've f*cked it up!" What can it mean? I suppose this makes a change from the dreams where I am late for an exam for a subject that I haven't done any study for...



Oscar is now 13 pounds and 2 ounces. We have decided to start "cutting" his breast milk with formula at night just to see if this helps him to sleep longer. The theory being that formula milk takes longer for babies to digest so leaves them feeling fuller for longer. It didn't work last night though. Dammit ;-).

Outpatients and the Camels

CF Clinic the other day. The outpatients is being moved temporarily while the new CF ward is being built. As planned I read the instructions as to where the new outpatients was and then completely failed to realise the location of the new outpatient building. After walking in the main entrance and wandering around aimlessly for 15 minutes, I finally admitted defeat and asked reception where to go. The outpatients is now in a separate green building. The new outpatients is shared with the heart outpatients in a big room, which is actually better from a cross infection point of view than the little old one, which had about 8 chairs in a pokey room.

Had a look around the CF Quarter of the room for tell tale signs of CFers: breathless guy to my right, check. Guy with sinus problems to my left, check. Girl with skinny legs in front of me, check -must be in CF outpatients! I must say that since I joined the CF Forum, I've been a lot more paranoid about cross infection, so I didn't bother reading any magazines, and I just listened to my mp3 player with half an ear out for Pauline. And made a point of washing my hands as I left. Then got paranoid about touching the door handle of the toilet after I'd washed my hands; Arrrghhh! this way madness lies...The FEV spirometry machines were being wheeled from room to room by bemused looking doctors, I don't think Pauline, Roly, Andrew, Jenny and the rest looked particularly pleased with the new location; they looked as confused as the patients at times. Blows were OK-ish 3.1/4.1 (don't know what that is in percent, probably 80%-ish) although I had been feeling slightly wheezy all week, probably down to the cold/damp Manchester air. As a result of my recent interest in CF ;-) I did ask Dr. Helm whether I had recently grown staphloccocus (no) and pseudomonas (yes). She told me it is usual for PWCF to be colonised by pseudomonas, because even though it is sensitive to antibiotics, it creates a tenacious biofilm, some of which remains after the intensive IV antibiotic treatment. Staphloccocus is more transient, so is in theory easier to get rid of. The strange thing for me was that I knew this already and was 99% sure I had grown "pseudo" since about 12 but it was still a bit unsettling to hear it said to me aloud.

Anyway, I have decided to wage war on the biofilm with garlic and apples. And to enter the Great Manchester run (with R) next year, which is for CF, and hopefully the training should improve my chest. I'm not looking forward to the cold night runs though, and I don't think I will get a good time. Got my holiday pack for our long awaited holiday to Egypt next week, although for some reason the antibiotics are Rifamplicin and double-dose Azithromycin, which are about as much use as a chocolate teapot when it comes to clearing chest infections, so fingers crossed I don't catch anything on the flight to Sharm-El-Sheik. Will have to make a travel med-list and order presciptions before I go (groans...) To say I'm looking forward to going away in the sun for a week is an understatement but Oscar has really been playing up this week (waking up every two hours at night) and Abby has been wandering into our bed at all hours in the night so I am a bit concerned about what will happen when we are all in one room. Abby is very excited about the Camels though ;-)

Toria

"I have learnt a lot here, there are whole wild days where I can feel erudition flowing into me until every border along the fabric of my being is overcome with an ecstatic saturation whereupon it is all I can do to hold myself together and not shatter with insurmountable glee!

There are other days when I spend long glittering hours staring out of high windows wondering exactly how far it really is to fall, and if perhaps it would be best to let my broken body shatter spectacularly upon the pavement with pools of viscous blood gathered around me like blooms, rather than continuing upon a path that is so utterly refuting of it’s end destination.

I like both equally."

Quite a writer. Capable of anything. I didn't know Toria personally, although I had read her eloquent, hilarious, and above all, honest blog, and her posts on the CF Forum. Toria died after a combination of CF, multi-resistant Pseudomonas, and a bitterly ironic surgical mishap put her into ITU. Whilst she was a vocal advocate for PWCF getting ports fitted, her lung was accidentally punctured during a routine fitting of a portacath. Her long battle in Brompton ITU was updated almost daily on the CF Forum, at first I ignored the updates, unwilling to get involved in something so heart-breaking, but then I was drawn into it, hoping against hope for any scrap of good news that somehow justice would be served and one of the brave and good people of the CF Community would recover. Finally, after a long and valiant struggle her poor old lungs could no longer hold back the flood of bloody multi-resistant pseudomonas. Toria leaves behind a gorgeous 10 month old son and partner. I welled up every time I held Oscar for days after I heard the news. It was just so unfair, taking someone so young when they had so much to live for. Things like this make me seriously doubt the existence of god and any higher purpose to the universe. Maybe Dawkins is right and it just is what it is. All I can say is that if there is an after world then I will want a seriously good explanation from whoever is in charge as to why Toria had to go so soon. But then she would probably do a better job of telling off whoever is in charge herself.

My deepest sympathies to her family and friends. RIP Toria. Thank you for teaching me not to take anything in life for granted. xxx

Edit: I have since read Toria's incredibly positive eulogy from her and her sister and I think this post has come across as too negative, which I didn't really intend. Here is a link to the eulogy, it is well worth reading.

Curry, Cocktails and the Pork Pie Thief!

We had a "curry and cocktails" party with some of R's old school friends the other day. As they were arriving at 8 this involved a mad panic trying to get the kids bathed, fed and into bed before 7.30 in order to give us time to tidy up, get changed and research how to make cocktails. This is what we came up with.

Singapore Sling
3 parts Gin
1 part Cherry Brandy
1 part Lemon Juice
Soda Water
Verdict: Fizzy Cough Medicine 4/10

Cosmopolitan
2 parts Vodka
1 part Cointreau
Lime
Cranberry Juice
Verdict: Doesn't quite live up to the Sex and the City hype, but good 7/10

Margarita
Tequila
Lemon (forgot)
Lime
Ice (forgot)
Salt on rim of glass (forgot)
Verdict: too sour but that could be down to running out of ice and the confusion of the cocktail makers! 4/10

DJ Dunley's Mix
Vodka
Gin
Triple Sec
Lemon
Cranberry
Verdict: A Surprisingly smooth made up drink! 8/10

DJ Dunley's mix was made by A after the curry because we had run out of decent cocktails to try. I suggested an Absinthe-based cocktail but no one was particularly keen ;-). I have to say we must all be showing our age, because in the old days someone would have suggested we start a tequila shot drinking game and someone (i.e. me) would have inevitably ended the night throwing up in the can. These days we're a much more sedate bunch and everyone seemed to get more excited about the curry takeaway. Anyway, it was nice to have some friends round for dinner, something we haven't really done since Oscar was born.

Grrrrr! Someone from my work has made off with my unopened pack of pork pies which I left in the fridge. I am on the lookout for someone overweight who is not Jewish!

Great Grandma

Oscar and Abby's great-grandma (on R's side) passed away today. She was 92, had lived a long life, she had a whole bunch of great-grandchildren. She also maintained her independence living in her own house until this Saturday. We'll all miss her. It was a mercifully swift death, (merciful for her and the staff of Wythenshaw hospital, as she could be quite fearsome and cantankerous when she wanted to be!) When I first heard the news the first thing that went through my head was disbelief, she was such a tough character, she had bounced back from a number of bad episodes, although we all knew this one was very serious, I couldn't help thinking she'd come back one more time.

It's a shame Oscar won't remember her. I think Abby will. Most Wednesday's R would take Abby (and now Oscar) to visit great-grandma (with her mum) and do her shopping. Abby would have a whale of a time revelling in all the attention and showing off her latest ball room dancing moves. (I had a sneaking suspicion that Abby was great-grandma's favourite, but don't quote me on that.) I guess this is one of the things about grief; the loss of the shared events that define who we are, in this case the weekly meeting of four generations of women from R's family.

One of the things now is how to explain death to a 3 year old? Somehow I don't think "resting in peace" or "happy in heaven" will cut it with Abby. It's funny at times like these I want to believe in things like heaven and an afterlife, like many Mancunians I have some of that Irish Catholic in me and I *do* find the church comforting and spiritual, but as to an afterlife; the truth is I just don't know, I'm still figuring it out, and it could all be it's just a construct us human beings have created to try and bring some comfort and moral certainty into what would otherwise be an infinitely perplexing and indifferent universe. All I can do is try to keep my answers as simple as possible, avoid euphemisms, and maybe leave religion for another day.

On the way to pick up R from the hospital yesterday, R's dad asked me "Do you know the way to the hospital?" I could only laugh in reply. After driving/catching a bus there every 3 months for the last 15 years (including one time when I had a cripplingly painful stomach blockage) I think I could probably find my way backwards. On a horse. I've got a check up at the newly reconstructed Wythenshaw CF outpatients on Wednesday, hope everything is well in chest land.

Billy Stoned

I must admit that my initial excitement at finding this (free ;-)) collection of "mashed up" songs has waned somewhat. It's still an interesting listen, I just don't think you can really listen to it as an album. However, there are still a couple of standout tracks on it. The one I like best is Billy Stoned. I think I like it because:

• Being from Manchester "The Stone Roses" are a big part of 90s folklore. They were good, it's a such shame they imploded so soon.

• It reminds me of being forced to listen to my Mum's extensive Billy Joel album collection on camping holidays in the car ;-)
  

The best thing about mash ups is they take two tracks from completely different musical worlds and make something completely new and unexpected out of them. I want to have a go! If I can just figure out where he gets the acapella stuff from. Stop the press! Oscar has only woken up once during the night for a feed (for the last two nights.) Hurrah!

Spliced Krispies, GHP's Full Album

The Princess is somewhere over the rainbow...

Me and Rach have joked that Abby's donor must have been a gay man; she has a total Sarah Jessica-Parker style shoe obsession and she loves dressing up as a princess. Thankfully her two nieces have donated a bunch of Disney dresses that are too small for them, the only trouble is she wants to wear them all the time and it makes her a bit overdressed for the nursery. At the moment she is obsessed with Snow White, she does sometimes call me the handsome prince though so it's not all bad ;-). Shopping in town is also a complete nightmare if we go past a ladies shoe shop; Last year while shopping in the Arndale Centre she dragged us into an expensive shoe shop and had a major tantrum when none of the "princess shoes" fitted her...

Abby and me watched the Wizard of Oz today (while Rachel took Oscar to the shops in search of clothes for a perpetual dribbler), it was embarrassingly enjoyable but Abby got very scared of the wicked witch so we decided to go outside for a walk in the autumn leaves instead. I sung Somewhere over the Rainbow to her, I don't think she was very impressed (!) but she did join in. Later on me and Rach managed to get both kids sound asleep in bed at a reasonable time. This meant we had time to catch the end of the X Factor with a Mango Lounge takeaway; Laura has lost proving once and for all that the general public have no taste although her version of "Somewhere over the Rainbow" allegedly chosen by mentor (!!?) Cheryl Tweedy was pretty dire. Great voice though. I blame Mariah Carey for having such a pants back catalogue.

We have recently found out that Abby has an imaginary friend called Jordy. I just hope I don't start seeing Jordy or I really will have to cut down on the Ceftazidime.

The Real Robinho

Well, after a year of promising, I finally got my finger out and took my 6 year old nephew Robin aka Robinho to his first football match. I think he enjoyed it, he didn't get bored until the last ten minutes of each half although he did ask a *lot* of questions, "Which side are we?" "How do we score a goal?" "How many points do we have now?" "I want Stoke to score!" "can you die playing football?" I was exhausted just trying to answer him, never mind walking to and from the match. Anyway we won (not always a given for our beloved Manchester City, especially when you take someone for the first time) Fair play to the Stoke fans they kept on singing even when they were 3-0 down and the banter between the fans was good.

I still don't like the new Eastlands stadium; it's in a grotty area, the locals seem to despise us, the stadium feels synthetic, the beer is too expensive, (the staff are clueless and don't make a load of pints before half time like they used to at Maine Road), and the walk from the car is too long. Our old ground Maine Road was at times a dysfunctional place that beat you as much as it fed you, but it was authentic, it felt like home (and the curry mile was a five minute walk away if you needed warming up ;-)). I guess it will just take time to get used to the new stadium. It was freezing at the match though, time to get out the winter coat and long johns out if I go again before the end of the year.

The 4th, the 5th, the minor fall and the Major Lift...

Well, I've always been a fan of the late Jeff Buckley, I'd advise everyone to go and buy "Grace" if they haven't already. This is the song he's probably most famous for covering (Hallelujah). The program is an interesting listen, aired on Radio 2 last weekend and hosted by Elbow's Guy Garvey. There *is* always the danger that you will get truly sick of the song after hearing so many different versions of the Leonard Cohen classic. Catch it now before it expires:

http://www.bbc.co.uk/iplayer/episode/b00f928x

The Kings of Leon have also finally clicked with me although for some reason it is "Because of the Times" that I'm listening to at the moment. Maybe next year I'll be listening to their current album...I don't go to Glastonbury anymore but I was quite jealous when I saw these guys on TV, almost made me want to get covered in mud and brave the "toilets" all over again...

"Fans",

http://uk.youtube.com/watch?v=MPHRV-Jszl4

and "Arizona", the best song on the album: (IMHO)

http://uk.youtube.com/watch?v=MeBIt7I2XpQ

Halloween and Pumpkin Rot

I hate rotten pumpkins. Especially ones with 1 inch of white fungus growing on them. Lots of kids from our street came round early on to trick or treat - Abby almost got into it; she's very shy but she kept peeking from behind the living room door to see the procession of witches and skeletons; which was nice. The pumpkin didn't hold out very well though, and I still have two big bags of eclairs left over which I wasn't able to give away...guess I could always store them in my stomach to keep them safe ;-). Didn't have a great night's sleep but at least Abby made up for it by being extra cute in the morning.

To sleep, perchance to dream: My first blog

Well, we've gone past the 3 month point with our beautiful son Oscar AND there is still no signs of his night feeding/sleeping patterns returning to anything like reasonable hours. Last night I think he awoke 3 times for a feed, I don't know it's kind of hard to count when you're half asleep and trying not to wake yourself up too much so that you can dive straight back to sleep without thinking of work or anything. Anyway, last night I actually had a dream that I remembered after I woke up; I was in someone else's house spying on a group of unidentified people with the help of a tiny girl in a matchbox car. She was living life with the fastforward button on and because of that she was talking too fast and all communication was lost on me. She kept trying to tell me something with words and pictures that was really important but for the life of me I cannot remember what. What would Freud make of it? Very random, but with Oscar sleeping in our bedroom for the last three months it was the first time I've done that (remembered a dream) for a long time.