Centre Parks with the Willow Foundation

Busy busy busy! my blog is so out of date I forgot to post about this holiday, and I'm off to Tunisia this weekend as well...anyway:
Last month we went to Centre Parks in Nottingham thanks to the lovely people at the Willow foundation. I did feel guilty because there is no way I am as ill as a lot of people who are granted their special day; but as my CF social worker said, I am fast approaching my 40th birthday, and after that I am no longer eligable, so it was a case of now or never this year really. I also thought I should give my kids a nice holiday just in case the shit hits the fan (whether through cf or work or whatever), and I'm not able to give them a decent holiday for a while. We had a great time, especially the kids, centre parks is taylor made for familes really, with lots of stuff for the kids to do. Seriously, I don't think they've slept so well before or since. I enjoyed it too, apart from the rowing which looks easy but is actually really hard ;-)

Ebay a go go!

I've started to put some of my dad's stuff on Ebay, I don't think we'll get much for it all but it's nice to know somebody will be able to use some of the stuff; especially his electric riser/recliner chair which I really hope somebody disabled will be able to use. Seeing some of his old stuff doesn't half bring back memories; he used to play D&D (dungeons and dragons) in the sports and social club at Phillips Hazel Grove. It's got something of a geeky reputation now but back in the day (before computers) it was popular in a cult way, there was at least as many women as men playing it in the group, at it's peak there were about 16 in the D&D group (AORTA: Association of reasonably trustworthy adventurers ;-)). We played it as a family too; my dad had read The Hobbit and The Lord of the Rings to my sister and myself when we were children and it really fired our imaginations, with D&D my dad as Dungeon Master would create a world similar to that in Lord of the Rings and we as characters in that world would have to negotiate our way through dangerous adventures...memories...

I've also got my mates to help out demolishing a rotten wooden outhouse and tidying up the garden, unfortunately there was so much thick ivy branches growing in the garden that taking down the ivy has demolished the fence! So now we need a new fence. We'll get there, hopefully by the end of the month because I could really do with putting the (emptied) house on the market so I can relax and forget about it. I'm not expecting it to sell straight away but at least if it's on the market there's a chance!

My sister has been working on the interior, it's not gone smoothly! The idiot she got in to do the decorating ending up giving the curtains away to a charity, so now everyone can look into the house and see it's empty. He also threw out the recycling schedule so now I don't know when to put the bins out! And he didn't actually finish the decorating job!!! Some people...

Kids last month in pictures

Dreams of Dad

Had another dream about Dad last night, Can't remember the details very well. He had been admitted to hospital but he hadn't died, he had recovered but not enough to go home so we were organising a day out for him I think; then the dream changed and we were on a weekend break somewhere, but I got lost and was trying to retrace my steps back to the holiday home we were all staying at. In the dream we (dad and me) had a long conversation but I can't remember what it was about, I think he was just saying wise dad-type things and I was was talking back thinking yeah, he was really wise ;-) In another dream a few weeks ago I met his spirit while walking along a beach, later on I met my Gran's spirit and I tried to get his spirit and my Gran's spirit to meet so they could talk to each other and move on. In yet another another dream a few weeks ago we were talking on the phone, he was still living in Caterham down south and I told him I loved him at the end of the phone call, think I woke up crying at the end of that dream.

Maybe this is to be expected? Obviously not having my Dad around anymore coupled with the swiftness of his passing has left me with an emptiness (subconsciously and consciously) that will take some time to figure out. I was talking to my sister about it and she said when someone close to you dies it leaves a gap in your soul and your soul has to grow and change shape. It's similar to what happens when you have children, you have to change to become more responsible when a child arrives to that you need to look after - when Abby first came home from the hospital after being born I remember I was so nervous, the in-laws brought a bottle of champagne and after a few sips I started to get little tipsy and I immediately started to panic thinking "oh no, I can't be tipsy while looking after a baby) . My sister's very cosmic, if you hadn't guessed. She's also lived and worked in Peru near Machu Pichu; I'm very jealous ;-). We're trying to sort out his estate at the moment but it's not easy, he was something of a hoarder so he's kept every single letter he received for the last ten years, not fun trying to sort through it all.

Anyway, in the conscious world ;-), it's two of our friends' 40th birthday this Saturday, it's music based fancy dress. I was originally going to go as one of the Beatles but R wanted to go as a duo so we're going as the White Stripes. Gutted, I wanted to be John Lennon for the night ;-) Ah well, at least the costumes will be easy. Think I'd better start working out as well...

The lodger

There is a new lodger in our house. She is called Holly and she is very furry. Her previous owners were going to send her to a cat's refuge because their son was allergic to her, so we have stepped in. So far so good; she likes being stroked, she likes being picked up and carried like a bloated-furry baby ;-) , she likes being combed, and she definitely likes begging for tins of tuna when I'm making Abby's sandwiches. Also; she really doesn't want to stay in the house for the first two weeks so keeps trying to escape whenever we open the front / back doors.

Because we don't know whether our kids will be allergic we have laid down some ground rules: no sleeping on beds, and Abby must wash her hands after stroking and picking up Holly. I do like having a cat around, they're good company, even if cleaning out litter trays is a bit of a pain...

Turn, Turn, Turn

The old man requested this Judy Collins cover of Pete Seeger's song be played at his funeral about a month ago. Ah, he was well into his sixties folk :-).

His funeral was last Wednesday and leading up to it I was dreading the whole thing. In fact when we parked up behind the hearse outside the chapel and the funeral directors got the coffin out I was really paniky and freaked out, but halfway through the service I felt sad but somehow serene. If he was there in spirit then I think he was telling me it was OK to move on, let him go, and not to be too sad. I'm going to miss him loads though, even though he was house bound in recent years he was still a big part of our lives.

Dad

My dad died peacefully on Tuesday 13th December, 4.30 PM. He was 65. It was only the week after his birthday and on his 65th birthday we all went round and he told us (my sister, my mum and I) how proud he was of all us and his four beautiful grandchildren; we talked about lots of things (including the Tibetan book of the dead, Greek legends and all sorts) and it's just such a shock that this would happen because he was really upbeat. We talked about what he would have for his Christmas meal. (He wanted trifle!) I'd just set him up with a new digital recording box for his birthday and he seemed really happy.

He went into hospital Saturday evening with breathing problems, when I rushed in to meet him at A&E (I'd been on a night out so had to get a train and R had stepped in to help him out and persuade him he needed an ambulance) he was struggling but he was also talking about the City game in the afternoon and how crap one of our strikers was. His breathing seemed to settle although he was on O2 he seemed to barely need it. R went to get him some clothes and turn his fire off and at about 11 I left him to get some sleep just before he was moved onto a ward. When I got home the hospital phoned and told me to come back straight away. Shortly after arriving on the ward he had had a massive aspiration into his lungs, and he just never regained consciousness. We kept hoping, but in the end he was just too weak to come back from this trauma. In a way I think it's what he would have wanted, he hated being in hospital, he didn't want to end up in a home, and he kept his independence to the end, which at times was a real battle for him.

My dad had Myotonic Dystrophy; it wasn't diagnosed until he was 50. it's a form of muscular dystrophy and it was complications from this that led to his death. He had had his ups and downs with depression in the last five years due to becoming more and more housebound as the illness began to restrict his mobility and limit his ability to eat. In fact this year I was giving him half my Scandishakes (he was on Ensures as well) to help him keep his weight up. We talked about tube feeds and neck operations but he was too old and stubborn, he didn't want anything like that.

His mind was so sharp, he was a clever guy, a funny guy and he loved life. I hope the ongoing genetic research can one day eliminate awful, horrible, unfair conditions like this.

Mum and dad got divorced when I was 18 but after it had all blown over they stayed good friends and for the last years she helped with his shopping every week and they'd have a good natter.

I'm going to miss him loads and I'm really sad but I think he'd rather we remembered the happy times and I think he enjoyed life; he had great friends, family. He had two great jobs. He was a genius at micro chips/silicon chips. With his jobs / holidays he got to travel the world, he visited every country in Europe and most states in America. he got to ride the pacific highway from LA to San Francisco. He lived in Manchester and London, in London he lived in Caterham in a lovely house near the south downs with fox cubs at the bottom of the garden.

Love you dad.

xxx

Ibiza In Pictures

Proud Brother

typical, my sister inherits the long legs and I get the short and stumpy ones ;-)

Last weekend my sister was finally given her BSc Hons in Geography. Me and my mum went to the graduation ceremony with her boyfriend, then we all went out for a drink and some noodles to celebrate! Happy times, even if the ceremony was a bit boring (A massive procession of students being clapped, and J was right at the end...)

Tumbles day

A tumbles day is a day to forget, and I've just had one. Yesterday I decided to work from home to make it easier to drop off Abby today and sods law; one of the big bosses decided to pay a visit to the office to see me, so I missed him. He also dropped off a request list that I should have had in May for a dealine at the end of the THIS month. Grump, grump, grump! ;-) And to top it off Abby threw a mega strop at the cricket club on the way back from the school summer fair because we wouldn't buy her any more sweets. Does anyone have a manual on how to be a firm parent? Because I seem to be made of mush when it comes to discipline.....anyway, I've got the wine out and I'm sulking. With three hours of Glastonbury I taped from last week.

Turkey Break in Pictures

Dorset Break in Pictures

Washed out at the car wash

I haven't blogged much about Abby and Oscar recently so here goes. Abby is now halfway through her first year at infants school and is doing really well. She is going for swimming lessons on Wednesdays (doing great) and ballet on Saturdays and she's turning into a very confident young lady (chatterbox!) of 4. Last week she won a spelling competition at school and won a prize so we were well chuffed.


Oscar we've been a bit worried about. Ever since he started nursery he seemed to catch every bug and cold that was going, in particular one weekend when he seemed to come down with Croup (barking cough sound, and seemed to have difficulty breathing) but in the end it wasn't too bad. I've mentioned in the past that it did cross my mind that he might have CF; when we did IVF we discovered my wife is a DF508 carrier and this led us to suspect the worst, however we contacted Leeds LGI and they said all donors are checked for CF so that would seem to make it highly unlikely. He also came back negative with the heel prick test. In any case in the last few weeks he does seem to have had a run of good health and this seems to have helped him gain some weight and he seems loads better in himself. His talking is coming on leaps and bounds as well, he is getting very good at mimiking and picking up some of the things we are saying to him. He can still destroy a room in 45 seconds as well!

I recently started a training blog It's completely no frills, it's just for me to provide a record of the exercise I've done and hopefully when I step it up and do more, I might see some improvement in my lung function. My misses bought me a mountain bike for my birthday, and I've recently been joining my mates on off-road courses. They all started early last year so their fitness level is a lot better than mine, then again I do wonder if my fitness level is where it is because of my CF related lung function (78%) . Uphill biking is very hard work. On my first ride my heart was beating so fast I thought I would collapse and I could see spots in front of my eyes. I was sweating like a stuffed pig as well (attractive ;-)) But I am starting to feel a tiny little bit fitter now (on my fourth ride) so hopefully there will be some long term fitness benefits. It's good fun going downhill as well ;-)

Some pics of me and the kids washing the car. Abby wanted to do most of the hosing but Oscar was interested too. When Abby wasn't looking he managed to grab the hosepipe and soak Abby from head to toe leading to a change of clothing halfway through the car wash. Very funny but it meant the car wash took ages as Abby insisted on eveything stopping until she got changed. A true diva in the making. :-)

4, 8, 15, 16, 23, 42...

The final season of Lost is just around the corner. I'm so excited! Well almost...I must be the only person still watching this! Hopefully this time we'll get some real answers as to what the hell's going on as well ;-)

Questions:

• Who is Locke?
• Who is Jacob?
• Who is Richard Alpert and why does he never age?
• What is the black smoke?
• What happened to Claire?
• Why is Jack's dead father on the Island and is he really dead?
• Why spend 4 seasons trying to get off the island and then spend the fifth season getting back on?
• Could the people in the past (70s!) change the future or has it already happened?
• Does free will exist?
• If I can't exercise my free will not to watch the final season does that prove free will doesn't exist?
• Is Juliet hotter than Kate?

Last night I went for my first jog of the year. Just went for a run around the estate for 10 minutes after R had done her run. Didn't feel too bad, although the cold night air made my lungs burn. I made sure I took my seretide, ventolin, uniphyllin so that my lungs didn't seize up. Oscar has come down with yet another cold, he's not really full of it in his nose and throat, he's quite hot and he doesn't seem quite himself.

Snow and the last outpatients

Went to the hossy last week. It was mainly for a checkup with the phsio about how I had gone on with the Tobi trial last month. To my grumpy annoyance the blows were the same (FEV1 2.85 / 3.8) but she said that was a good thing; the important thing in the first month of the Toni test is to make sure that the volume does not fall, as that would indicate some kind of allergic reaction (to the Tobi) was going on. She did notice I had a wheeze at the end of the spirometry blow, so we discussed me going back on Uniphyllin to help combat it. So anyway the plan is next month to ditch the crappy old Pari Neb and start on the Tobi trial through the iNeb next month. (on a one month on, one month off basis) By then the outpatients will have moved from the Heart area to the new outpatients above the new super Pearce ward. (where it is alleged you can watch Sky Sports and get foot massages...I should be so lucky ;-))
I've also got the notes back from the doctors telling me what my Genotype is: G551D/N1303K.

Other news, Oscar has been really poorly for the last week with a D&V tummy bug, which promptly spread to R, her in-laws, and finally, me, despite washing my hands continuously and rubbing with alchogel afterwards (I now have the hands of a 100 year old man!). Being ill I've not really eaten for 4 days and I feel like that skinny guy out of Twilight (only not as tall)

Anyway, on Sunday it properly snowed in Stockport for the first time in years, so we took Abbby sledging down the golf club, and she loved it. Later on though we nearly got snowed in at the in-laws house when the roads froze and all the cars going through the village couldn't get up the hill to get out. For a while it was like vehicle civilisation had ended and we were back to doing everything on foot! Me and R were serious about settling the kids down at the in-laws and doing a 6 mile snow hike back home in the dark to get supplies and then walk back in the morning, but by the time we went back down to the village, the temperature had risen slightly and the snow was beginning to melt. I was slightly disappointed, but only slightly, because my legs were already beginning to stiffen up after walking for 20 minutes in the snow, so god knows what they would have been like after 2 hours plus. Would have been romantic though, it's great to be outside at night in the snow, everything is so quiet because the snow absorbes all the sounds, and covers all the hard edges, I just love it.

Anyway, everyone seems to be on the mend, so bring on Christmas!

Oscar's imaginary CF!

I really don't think our (18 month old) Oscar has got CF, btw, but some of the similarities are a bit disconcerting:

• Chest infections. Oscar was on ventolin and (banana flavoured) Amoxicillin after a virus he picked up last week moved onto his chest and gave him a chest infection. By yesterday his breathing was really-really wheezy, laboured and clicky, you could tell there was loads of gunk down there, and he just wasn't himself, he would play for a minute or two, but then he would roll around on the floor screaming until he was picked up. (carrying a 21 pound toddler around all day is a bit of a strain on the back!) I phoned the emergency doctors and the nurse on the phone who filters the calls before giving you an emergency appointment was a real bitch; I tried to explain to her what the situation was but she kept interrupting and cross examining me like I was in court or something, I felt like saying "look I have CF and I know what a chest infection sounds like, if my chest was as bad as Oscars I would be checking myself into hospital for some IVs!" Anyway, we eventually got referred to a doctor who agreed he had the startings of a chest infection, we then had to dash across town to get to a 24 hour pharmacy in Fallowfield. We then gave him the ventolin and amoxicillin (with a baby spacer to breath the ventolin in with) and in the morning he seemed to be a lot better.
• Constipation / blockages. Oscar was on lactulose for being blocked up, but then he seemed to get things under control. Then after another week or two he went and got really blocked again so he was put on Movicol, twice a day, decreasing to once a day when his bowels settled down.
  

Here's some pictures of me and Oscar clowning around in the supermarket on the day he had his chest infection. He was fine in the morning while we were shopping then he went downhill really fast in the afternoon. Then he was much better in the morning. Kids eh?

Everyone's poorly except me and my monkey

Everyone's poorly except me :-). Abby's got a stonker of a cold and has forgotten/is refusing to poo, this is giving her really bad stomach ache so we've put her on high fibre and Lactulose. We went to Blackpool to show her the illuminations last weekend but had to drive home early because she was in so much pain from needing to poo but refusing. I think it may be psychological as she's just started school and maybe it's all a bit intense for her; it's not like nursery where if she doesn't feel great/is tired she can take herself off for a snooze/some quiet time on the bean bags. Also, she's gone from being a big fish in a small pond to being a tiddler in a massive shouty lake! Oscar has just vomited the entire contents of his morning bottle of milk all over R, and he's had to take the day off nursery because he's just not himself. R went to the MRI to find out about her protein C deficiancy, they didn't really tell her anything she didn't know, except she should have a dose of heparin as well as wear the surgical stockings before long hall flights (oops! We just got back from Boston the other week!) As for me; well, I've discovered I'm allergic to Septrin (nasty rash on my ankles which seemed to be spreading up my legs, thankfully it stopped when I stopped taking the septrin.)

Anyway, I need to blog more but I'm too busy at work! Here's some 70s psychedelia from the Flaming Lips, haven't got any of their albums but I may buy this new one. I love the bassline!

Four Sleeps 'Til Boston...

Only four sleeps till me and the misses go for a long weekend in Boston for our tenth anniversary! Boston in the fall. I'm torn; I'm excited, but it's the first time we've been away from the kids for longer than a night, so we'll miss them big time. It'll be strange being husband and wife rather that mum and dad for a few days. What the hell will we talk about? ;-)

We've been "mum" and "dad" for so long I've forgotten what we used to talk about before the rugrats arrived. Mealtimes will be strange as well without having to figure out what Abby will eat on the menu and quickly then wolf down our food before Oscar gets bored and attempts to swallow dive off the top of his high chair...:-)