Result!

Jake got the all clear! Perhaps I was wrong to be a pessimist after all!

Prof Haers had a good old look in Jake's mouth and is really pleased with the healing process, couldn't see any sort of abnormality or failed repair and has effectively signed us off until Spetmber 2010. We spoke about the sneezing and the food coming out of the nose but he said that as long as it was the sneeze that was propelling the food and not the lack of palate being in the way, it wasn't a problem. The fact is that he only had the operation 5 weeks ago and so things are still healing, repairing etc and therefore it is likely that his food will be irritating him a bit, hence the sneezing. It's been a while since food came out of my nose but I remember a good sneeze is what caused it.

So it seems that we're genuinely at the end of the significant part of the surgery process and the next one won't be for at least 7 years, which is very long time away.

We have to keep his teeth as clean as possible with regular (free of charge) dentist check ups which is just the same for any other kid. Also we'll be seeing more of the speech therapist starting in around 6 months time. This is another very important part of development but at least it doesn't involve a scalpel or waiting around in hospitals for days on end. Also loads of kids have speech therapy, I know of one right now who is two and hasn't spoken a word yet. He will, of course and that's what the system is there for; because we're all different and do things in our own good time.

I had Jake to myself yesterday afternoon as Clare had to work and it was good fun mucking about with him, he's becoming a real laugh. I found a spot on his shoulder blade which makes him laugh uncontrollably and exploited it to the full. He's crawling everywhere now, (although still doesn't realise how much quicker it would be on his hands and knees than dragging himself along) and I reckon he'll be walking in a couple of months. Perhaps in time for our next trip to Spain.

We're going to Spain with Sarah, Hamish and Sadie, who had her christening on Sunday and I cannot wait. It'll still be a different trip to the old holidays we had there but it's going to be nice to go a) with friends b) when the weather will be good and c) when Jake is easier to manage / transport. There'll be no sterilising, no formula, longer sleeping patterns (Sadie already sleeps until 8am) and we can all have a good laugh together.

More soon.

The moment of truth

We're off to Royal Surrey this morning to meet Piet and the team for the 6 week check up following Jake's cleft palate repair. I am convinced that some further surgery will be required but am hoping upon hope that none will be and that everything is healing nicely. Other than being what some would describe as a pessimist, but what I would describe as a realist, my reasons for thinking this are that food is still coming out of nose when he sneezes after eating and there is air escaping down through his nose.

We can't see a hole but the professor did say that Jake had a short palate when he brought the sides of it together and that he managed to lengthen it. So basically there is a bit at the back of his palate which actually wouldn't have been there if he hadn't been born with the cleft. This is the only part of the repair which is fabricated. Not fabricated in as much that anything has been added but that it has been put into a position which it has no right to be in. And therefore, perhaps this is the most likely point of failure in the whole process.

Maybe I'm worrying unduely (and I hope I am) but I like to deal in science and high percentages, I'm not reallly a gambler and err on the side of caution so, it seems to me that it's more likely than not that this is where the problem will lie, if at all.

A short palate may not mean more surgery of course, it may just need some speech therapy and coaching. In fact more surgery will only be required for developmental or social issues which a fistula (small hole) or short palate would cause. Of course, food coming out of your nose when you eat would be considered a social problem - I can't imagine the kids at his school turning a blind eye....anyway we'll see and I'll report back when we know.

On a brighter note, Jake's sleeping is getting much better. As regular readers will know, I like to moan about his sleep pattern so it's only fair to inform that he has been going through until 5.20am worse case and, like at the weekend and this morning, 7.20! That is very nearly as good as before he was born. I'm not anticipating the need for an alarm clock again just yet but it does seem that after 10.5 months of disturbed and deprived sleep we are nearly there.

Lastly, a momentus occasion last week saw Jake at a barbers having his very first haircut. Clare resisted until the last moment but when even her brother mentioned that his curls were getting out of hand, something had to give. We kept some of his mop for posterity, but here's a picture of his smart new hair cut!

Kari Callen - The next Susan Boyle?

Just seen some guys Tweeting about this. It seems the subject of cleft lips and palates are going to be getting some high profile exposure if this lady gets further in the competition.

Kari Callen was born with a bilateral (up both sides) cleft lip and palate. Hasn't done her voice any harm!

Cleft lip and palate

last one, I promise!

What is a cleft lip and palate

see below, further apologies

Diagnosis of a cleft lip and palate

Indulge me here, just doing some Googly experimentation

3 years on

Today is our 3 year anniversary. A lot has changed in 3 years. We got married on Saturday 15th July, 2006 at St Mary the Virgin church, Headley and the reception was held at City of London Freemen's school in Ashtead. Truly it was the best day of our lives, the sun shone, the wine flowed and I'll never forget it.

Everyone gives you advice for your wedding day but the one piece of advice I'll never forget (even though I forget who gave it to us) was to step back and take it all in. It goes so fast and if you don't stop and have a look you can forget so much of it. We made several conscious efforts to stand together and just look at the crowd, take in the laughter, conversation and general merriment. I made myself take mental photographs and the one I remember most vividly was as we were walking back down the aisle. Because we were at the front, obviously, with our backs to the crowd, it wasn't until after our nuptials that we turned fully to face everyone. I remember seeing all the hats and dresses and ties and thinking what a brilliantly coloured scene it made.

Another highlight was walking into the reception to rapturous applause. Since my more exuberant youth I am not so much of a limelight seeker and Clare even less so. We worried about feeling too much of the spotlight on our wedding day. Not only did that not bother us, we were pulled towards it willingly. When you're looking your best and every single person in the room is happy to be there, happy to join in and share your day, you just can't help getting a lift from it and really taking advantage.

I even enjoyed my speech. Despite the comment about shirking the limelight I don't mind speaking in public. I used to hate it but years of presenting to clients gives you the confidence to deliver to a crowd. Plus it's a million times easier doing it to a load of friends already well into the hospitality. By the time I was toasting the best men I almost didn't want my turn to end.

The best men speech left me suitable roasted, culminating in a story which I won't go into here other than to say it involved a small French apartment, a baguette and a story I wish I'd never shared.

Most weddings see me rather the worse for wear and I'd told myself to behave, what with being so on display an all. I, for the most part, obeyed and outside the three glasses of red wine I downed prior to my speech, stayed remarkably sober all night.

Simon, our chief usher did an impromptu karaoke set with the band culminating with a brilliant rendition of Mustang Sally and even I danced all night.

I've never smiled so much in one day. In fact it was the day that I learned properly how to smile for the camera. Photos before then always showed me scowling when I thought I was smiling. When you put on a smile it feels really fake but actually looks like a smile. Crazy I know!

We were talking in bed last night about the day and how it was the best day of our lives. We felt bad that it still feels like the best day despite having been through a much bigger day in the last year. Jake's birthday was probably the most significant day, certainly the most anticipated day and easily the most emotional and important day of our lives but our wedding day will always be the best day we've spent together.

It did have a sad flipside as many of the people at the wedding were at another church the day before for the funeral of Mickey, my dad's best friend and a man who was like an uncle to me. It still makes me sad when I think about him and how someone as good as him could be taken away so young by such a horrible illness. I hope he was looking down on Clare and me that day.

R.I.P

An interesting weekend

I feel a bit like I've just been 12 rounds with Tyson. Actually worse than that, Jake could have Tyson, no sweat.

This is all a bit dramatic I suppose, it was only 3 days and we're both still alive but it was hard work. I think that women reading this are more likely to think 'now you know' rather than 'what's all the fuss about?'. That's because looking after a child, or rather, a baby, on your own whatever your gender is not easy for a day, let alone a weekend. Yes, Clare does it everyday but she does get some respite when I walk in and take over and then we get to spend an evening together.

I had a few plans for this weekend but for one reason or another (mainly hungover friends and yet another bout of man flu) they didn't happen, so, whilst I went out to town, the park and to show Jake his granddad's model aeroplane, I talked to remarkably few other humans. The only talking was via a series of high pitched, overly enthusiastic questions, which seem to be the only way babies get spoken to.

*high pitched*

"is that your tummy?"
"are you a clever boy?" (standard high pitched response is "yes you are, yes you are!"
"do you want some food?"
"where's your mummy?"

...repeat until insane.

I found myself most bored when indoors and wishing the weekend away and less so when I got off my arse and went out. Seems obvious but it's easier to stay in and wait for him to sleep, wake up, eat etc but time goes a lot quicker outside. So we went to the swings, played a lot, ate a lot and had a good time together.

Jake is crawling now, well army crawl, he'll be on his knees this week I predict and can pull himself up onto the furniture. I discovered this when I came back from the kitchen with a drink to see he was on his feet. Felt a bad parent, thought I'd left him in the safety of soft play items, however in the blink of an eye he was on his feet. No harm done and he'll need some knocks and bruises to toughen him up and help him learn that going face first into wooden shape sorter blocks isn't such a good move.

The crying is a pain but it gets me more frustrated when Clare's around as I know she'll be able to solve it if I can't. When you're your only option you just get on with it. That said yesterday afternoon was testing me to the limit. I had two hours to go until bedtime (when active duties were over) and he was hell-bent on screaming down the clock. He'd slept, drank milk, had his nappy changed and wasn't poorly with anything yet was screaming to the point where no noise came out of his mouth. When it's this ridiculous, the face he pulls is almost humorous but you can't sit there laughing at a screaming baby. Anyway we got through it and it was a rewarding experience. For Clare that is, she had a lovely, well deserved and overdue break.

Here's my Facebook status update from 'yesterday at 16:55' (just for you BC!)

Clapa's new website

Clapa relaunched it's website recently and although not much has changed, their before and after gallery shots are now better laid out than before. I just went back to have a look and saw Jake's entry. He's the only one smiling! Still can't believe how good it looked just after surgery. His scar is healing really well and most of the redness is gone and although the lip is still kinked up, it's coming back down slowly.

Here's a reminder of the difference a day makes!

A big week

As I mentioned on Friday's blog, Clare is going back to work this week and then she's off to Spain at the weekend so times, they're a changin'. Clare returning to work means many things; more money in the family pot, diversity and a welcome break for her, me probably taking on another night shift each week and life getting back to how it was, just a little bit. It'll be like someone just unpaused our remote control. Clare can't wait for her new routine which for July and August is just two days a week and then three days a week from September. Jake starts at nursery from then and that'll be my new routine on Mondays. Clare will have to take the train to work as we now only have one car, and I'll take him and collect him at the end of the day. Promptly too as they charge around £5 every minute you're late - although they throw in the first minute for free!

Then as Jake wakes up on Saturday, Clare will be leaving for the airport, not to return until Monday evening. I was anxious about this before but now I'm really looking forward to it. This weekend was a bit of a trial run and fairly straight forward. I just need to remember to take Jake's food out of the freezer for the day - most nights sees Clare lovingly preparing all manner of organic purées for the week and freezing them in ice cube trays - he has porridge and banana for breakfast, then 5 cubes of anything from 'fruity chicken' to apricot, apple and sweet potato and a fruit purée for pudding and finally another 5 cubes followed by yoghurt for tea. He finishes the whole lot off with milk and then bed. He certainly eats well and frankly, a lot considering his size. I could easily survive on less than he eats but I suppose I've done all my growing. Well I'm not getting any taller at least.

I'm going to visit some friends and will probably spend some time in the park. Jake has a ball and although he can't stand he can kick it if I suspend him from his arms and swing him at the thing. More fun for me than him I suspect but I'm determined that he'll enjoy sport so we can enjoy it together. My dad hates football and isn't into many of the traditional sports so we never did anything like that together growing up and it's only really now that I wish we'd spent time together doing sport or any sort of activity. I always bring up the story of my last football match for the school which I'd pleaded with my dad to come and watch - he promised he'd be there but never turned up - I was gutted and I know he probably feels a bit bad about it - it was pretty lame not to come along! Anyway he was very busy trying to pay school fees and build us a nice big family home and take us on holidays etc, but having a child has taught me recently that the big, expensive stuff is nowhere near as important as the small, free stuff. The detail if you like. Kicking a ball, building a camp fire, going to a football match, going fishing, trips to the cinema, all of which are affordable financially but most of which I never did because the time was never afforded. Don't get me wrong, I had a good childhood and never wanted for anything but we should have done more as a family and spent time together and although I haven't got much money, I do have time and I'm not going to waste it. I want Jake to have special memories of the things we did together instead of making me feel bad about the stuff we didn't!

We're a bit worried about the repair as there's still a bit of food escaping from Jake's nose when he eats - not all the time and much much less than before but there is some. Clare thinks the back of the palate may have broken down but we won't know until the check up next month. Just praying we don't need to go through it all again.

Progress

We're getting there slowly. Tomorrow is one week since Jake's operation and he's starting to settle as he gets used to his new mouth. Generally he's ok during the day and smiling and laughing just as much as ever but he's still struggling at night. The main problem is that he won't go near his bottle; he wants the milk but gets the fear when he sees the teat. It's fair enough I suppose; after 9 months of learning to cope with milk being squirted into his mouth everything now seems different. Ann explained that after speaking with adult patients who have gone through the same operation, drinking can feel like they're drowning as the gap inside the mouth is so much smaller. Had he not had the operation, I think he'd scream just as much if we put him to bed without feeding him. We've started using the syringe just so we can make sure he's hydrated and satisfied enough to drop off. He wakes up again at 10ish when we give him the ibuprofen for the swelling and then sporadically throughout the night thereafter. That said, he went from 10.30 to 05.30 last night which is a huge step in the right direction.

Clare goes back to work next week!

I can't believe it's come round so quickly and it's going to mean a fair amount of change. I can no longer play the 'I have to work so therefore have to sleep' card at will. To start with it'll be two days a week and then from September, three, when he goes to nursery one day a week. We're very lucky to have mothers who are enthusiastic about looking after him while Clare goes back to work as we certainly couldn't afford the childcare but also that it's going to give him more variety in his life. The grandparent / grandchild relationship is pretty special and important and I'm really grateful we live close enough to make it happen.

Clare goes to Spain next weekend!

This is my first major test of fatherhood. I know this will sound crazy but having never looked after a baby for an entire night and day single handedly, I am slightly nervous. Clare is away first thing Saturday and back last thing on Monday so I have my work cut out.

I have decided to do everything as normal, I'm not going to hibernate and watch the clock tick down, but try to have a busy weekend and see people. Even without having to be in sole charge I have neglected my friends and social life of late through tiredness and lethargy so this is a good opportunity to reverse that.

I read in one of Clare's magazines, an article about a guy who said that men will never bond with their children like their wives will. Whilst I refute that, I do think it can take longer and the first year has definitely been tougher than expected. I did get the instant protective bond when Jake was born, helped by all the emotional turmoil which led up to the birth and from having seen him so much on extra the scans we had. Since then, I've felt that we've bonded well, he smiles whenever I come home from work, I can make him laugh, I play with him etc, but nothing works as well as spending lots of time together. Next weekend will be an opportunity for that. For him to see me as something other than comedian Dad but someone who can properly look after him like his mum does.

The next stage

I remember writing in this post last year when we were on holiday in Egypt, about a friend of a friend whose boy was born with a cleft lip and palate. He wrote to me to say that his son had been through both operations and they were getting on with their lives quite nicely. I also remember thinking that I couldn't wait to be at that stage where the only thing to worry about was a bit of speech therapy maybe. Well, we're there now. Jake came though the operation really well and was up and smiling less than 24 hours later. Piet Haers came round after the operation and said that he had a slightly short palate (which can cause speech issues) but that he was able to lengthen it.

We're back home now and are settling into the routine of administering pain killers every few hours and keeping Jake as happy as possible. He won't touch his bottle, which we were warned might happen, but is eating really well. His sleep pattern has gone back to that of a new born and is up screaming several times a night. This is especially hard as we can't give him milk to placate him and he doesn't fancy a yoghurt in the dead of night.

Feeling washed out and drained today, hence the lacklustre blog, however there is a sense of relief in our house that the second of the three major operations is over, done and dusted. If we're unlucky there could be a revision operation or two but for now it's a nice feeling that he's got through and is now back on track with a 'normal' palate and development can continue.

As always all the staff at the Evelina hospital were lovely and we continue to be thankful that there are people in the world prepared to do that sort of work, well and for sod all money.

Will write more when feeling more inspired.

The day cometh

So we're off to St. Thomas's later on this afternoon for the second (and hopefully last) time this year. Well hopefully the last time for 7 years when the bone graft will be done.

The drill is the same as before. Arrive for a 15:00 consultation to make sure Jake is well enough for the operation and then 'at leisure' until sleep in Gassiot house opposite the hospital. Jake's been bumped up to the first operation of the day which is brilliant news as it means that he'll sleep through most of the starvation period. The downside is that I (having drawn the short straw) have to get up at 01:30 to give him his last feed. Anyway last time we had to wait around until 13:30 ish before he went down, but tomorrow he should go into theatre at more like 08:30. All being well the operation should be over by midday and the recovery can begin in earnest.

I think it's better that he has the most amount of time possible between coming round from the op and night time to give him (and Clare) a chance of a reasonable night of sleep. This time we booked Gassiot house for the second night which means that I won't have to sleep on the floor again. I know it's not about me but I'm no use to Jake after 4 hours of sleeping on a solid floor. Mind you, I'm not much better after 8 hours in a bed!

Jake will have a morphine drip up all night and this should be removed mid morning on Friday. The nurses will then take us through the routine we need to follow for the next 2-4 weeks. Firstly he'll be on a mixture of paracetamol and ibuprofen for at least 10 days and then we can slowly reduce the amounts depending on his reaction. Next he has to wear socks, secured by medical tape, on his hands. The first thing I thought about this was that he'd be uncomfortably hot but I think really the problem will be that he can't pick anything up or hold on to it. How frustrating will that be for him?! He's just learnt to coordinate his opposable thumbs and now we're taking the ability away. He's going to be very bored I think and a baby in pain plus boredom equals the square route of not much fun for any of us.

That said, this is the culmination of a long and fairly stressful year and I'm looking forward to it being over. There might well be the odd revision operation (there's another one tomorrow) and probably some speech therapy, but this should most of the hard work done and dusted.

It feels odd that after all that has gone into this blog, the point of it could almost be a thing of the past. I find it difficult to remember Jake will his cleft lip and how I felt about it. It was only 5 months ago but I'm glad of the amount of photos I took and the one on my office desk is still one with the cleft. I'm still proud of how he was born and how he looked because, albeit a bit different, that's how he started.

I'm going to carry on with the blog as I enjoy it and a few others have told me they do too. Ann mentioned that another of her sets of parents with a cleft affected child also read it. I don't know who you are, but it's good to know there's people reading it who can really empathise. So, hi to you and thanks for reading.

I think I wrote about the Clapa tea party we went to where we met a young girl who was pregnant with a baby to be born with a cleft. Well, she had a little boy and Ann says she's doing really well. She took the baby back to the next tea party and for me, that takes a lot of courage. The dad isn't about, she lives in Kingston and has no car. To get to Guildford requires a walk, a train, a bus and another walk. She's just 20 and we got the impression from the questions she was asking, that she was really worried about what people would think and how they would react. A lot of the same things we worried about but we have each other and a car. Good for her for not letting any of that crap stop her and getting on with her life looking after her beautiful baby boy.

So that's it for now. The next part of the journey starts with the 13:47 to London Waterloo.

Ryan Air sucks

I've written an article on another blog to highlight the experience I had on Ryan Air and the rip off merchants they are. In order for it to progress up Google's ranks, I'm linking to it here.

I'd urge anyone reading this blog who has a blog or website to link the words 'Ryan Air sucks' to the following url and see if we can make a difference.

Oh yeah and never fly with them again!

http://ryanairsucks.wordpress.com/ryanairsucks/

(had to use WordPress because ryanairsucks.blogspot.com had already gone. Wonder why?)

Italy - the perfect holiday

We're back and a fantastic time was had by all. We hit Casa San Venanzo at about 15:30 Sunday afternoon after I miraculously found it from memory. This place is incredible, my father bought it almost six years ago but due to Italian bureaucracy and Italian builders and Italian weather and Italian architects it is only really properly finished now. My parents had a holiday there last year but it wasn't fully furnished then. Since, they've had people from a shop in Spain bring two lorry loads of furniture and completely interior design and dress it for them. The garden is almost finished and all the grass seed is going down next week. The first rental guests will be arriving in a month so we're hoping the industrial grade irrigation system does its job in time. This was a grand design project but I think it would have tested even Kevin McCloud's patience to the limit.

Anyway, we had a brilliant time and explored the various hill top villages, got invited into the neighbouring farmer's house for dinner and discovered all about their family via our gardener / interpretor, went to the coast, cooked enormous dinners and drank a worryingly amount of Verdicchio and Chianti. Just what we needed and even more so to block out any thoughts or worries about this week's upcoming appointment.

I'll do a full update about that before we go but for now, here are some holiday pics.

The ten best things about Jake

Just in case you thought this blog was simply my forum to moan about how hard parenthood is, I thought I'd list the things I love about our boy.

At 9 months old Jake is full of personality and is just so excited about everything. Not all the time, he winges and cries sometimes and gets tired and arsey but all babies do that. I feel like I'm arriving at a point where the good stuff is outweighing the bad; before the good stuff was compensation for the bad stuff but now the bad stuff is becoming insignificant because there's so much good stuff. I'm sure there's people who read this blog and can't understand why I write what I write about his not sleeping and the stuff I find difficult to handle. They probably think I should get over myself and realise that this is standard stuff and I shouldn't be writing a list of good things when it's all good. If nothing else, this blog has been 100% honest since the day I started it; from the feelings regarding the cleft and others' reaction to it, my annoyance at his sleeping habits, how I felt, how I wanted to feel and so on, so this is just a continuation of that. Why blog for effect, why say 'it's all gravy' of it's not?

I'm sure some people use their blogs to paint a perfect life, to further an agenda, to build an online persona, mine is just a diary of events, thoughts, feelings, hopes and a general mind dump. At first it was necessity to get it all out and whilst it's developed into much more than that, it still acts as an outlet. Up or down, I get to write things down which I may not articulate in any other way and I still find it useful for that. Also I enjoy it. English was the only subject I was ever any good at and I love language and a good sentence. I ramble too much and I know many of my sentences are too long, but I enjoy it all the same. At the time of writing this blog runs to around 38,000 words and most modern fiction novels are around 55,000 so there's clearly a lot of work and time gone into to writing it, especially given that it's fitted in around everything I have to do.

Anyway, I'll continue to be honest on here as I can't see the point in doing it any other way.

So, here are the ten best things about Jake.

1. His smile - This is number one, not just because it was the thing which we were concerned about most. More that I get the smile first thing in the morning, when I come home at lunch and before I put him to bed.
2. His laugh - Jake's always been a laugher. I equate laughter with happiness so the more he laughs the better. It's infectious too and I could listen to it all day.
3. Bedtime - Despite the yards of blog dedicated to moaning about his waking up, he does go to sleep like a very good little boy. I put him in his cot, turn on the mobile and he just stares up in wonder with a cheeky grin. He goes to bed happy which allows me to pour a glass of wine knowing he'll be asleep for the next 10 hours!
4. Bath - Jake LOVES his bath. I think most babies do but he get so exited about it and as I lift him in his legs go crazy like he's powering a cartoon car. Then he starts splashing and laughing and I get soaked. My favourite part of the day.
5. Noises - He makes some very cute noises which range from 'mamamama' to a happy shriek and they all provoke a proud dad reaction.
6. Clapping - This is the new favourite game. 'Jakey clap' and he claps. Our child is a genius. We're working on waving but he doesn't get it yet.
7. Determination - Even though I get annoyed every morning, I'm impressed how set he is on tweaking my nipple, grabbing my flesh or ripping out my armpit / chest hair. He doesn't understand 'no' yet but he will!
8. Him & Clare - The bond is awesome to see. No Dad will ever get quite the same relationship as a baby does with its mother.
9. How he makes me feel - Proud. A proper grown up. Validated.
10. Excited for the future - There's so many things I can't wait to do. Take him to play football, teach him to fish (once I've learnt), build a camp fire. It's going to be a lot of fun.

So there you have it. My boy in a list. Sorted.

Jealous, moi?

So, Mullet, our friend not on Facebook, let me know yesterday that baby Sadie slept so well the other night, that they had to wake her up at 8.30. She's 16 weeks old tomorrow and this sounds about right. So I shouldn't be jealous, this is normal beahviour. Baby comes along, makes a fuss for a few weeks, declares war on mum and dad and then decides they've had enough and sleeps all night. This is the way things should be. That same morning Jake woke up at 5.15am and finally fell asleep as I was leaving for work dragging my eye balls behind me. Bless.

The layout of the house in Italy is such that Clare and I will sleep in a room in the roof space, effectively the second floor, whilst Jake will sleep in a room on the ground floor. This room also has no windows yet due to Italian planning laws. The first advantage of this is that the room will be completely black from the second we shut the door to the second we open it, and the second is that there are two stories of masonery and soft furnishings between our room and his. This would be the perfect opportunity to practice the cruel-to-be-kind experiment. There are no neighbours BUT my sister and brother in law will be in the room on the floor below us and therefore above him. I'm hoping the construction is dense enough for him to cry and not wake them up. Either way, we might get a good kip just as long as we take the batteries out of the baby monitor!

I can't wait for this trip. The holiday to Spain was more of a field trip & learning experience for me. Or an endurance task. I mean, looking after a baby in the comfort of your own home is hard enough but we decided to pack the entire contents of our house, haul it across Europe and do it in a less convenient, more expensive location where the weather wasn't as good as we'd expected. That's a bit unfair but it wasn't a holiday like I remember. A good thing too, it was time I realised what travelling with a baby would be like and also a glimpse of what it will be like with a child (or children). I've always enjoyed watching families at airports getting stressed and arguing, airing their laundry in public, but now I know why they do it. Airports are way stressful places and children can be very, very annoying. Anyway, the point is that there are lots of us going on this trip and so we ought to be able to have a night out on our own once or maybe twice and there will be people on hand to help out in the day too if we need a hand. But most importantly, this is the first holiday we've had as a family for more than 10 years and there weren't any grand children then, so it has the makings of something really special. I can't wait!

The cleft palate repair

I was kind of putting this one off but it's looming. Jake's lip repair operation seems a long time ago now, back when he was still really small. Now he's got a full head of hair, happy standing up (with some help!), sort of cruising, eating loads and making 'mamamamamamama' sounds every day. This is much more like taking a little boy to have his tonsils out, only quite a bit more involved.

I must have read virtually everything the Internet has to say on clefts and their repairs but the science still does my head in. I'm a bit squeamish so anything anyone does to someone else's body in terms of making them better astounds me, I just couldn't do it. So, given that these people exist (and thank God they do), I'm just so impressed that they're so driven to doing it well and improving their skills and helping the medical community better understand in order to advance their area of expertise.

Just reading it makes my eyes hurt so please never give me a scalpel.

I researched the lip repair and because it's soft and malleable I kind of understand how they are able to unhook the bits which went in the wrong direction and sew them up but the palate repair operation seems a much more unlikely task.

I also worry that we don't know everything. Before the lip operation we were told about the success rates and how unlikely revisions would be but then we saw people in the hospital waiting for revision ops. I wonder if there is anything we should know but don't. I hope not. We're seeing Ann when we get back from holiday and she'll explain more about the process and I can hopefully blog it in plain English.

It sounds obvious but I hope it goes well, I hope he doesn't suffer too much and that the pain isn't unbearable. It is heart breaking to see anyone you love in pain let alone a 9 month old baby. He's going to have to wear gloves to stop him effectively unzipping the repair which has been know to happen. Gloves are a problem though as Jake learned how to take off his sleep mits about 10 minutes after he put them on! Apparently Gap socks secured with tape will do the trick. I can just imagine how much he's going to enjoy wearing socks on his hands in the middle of summer - talk about how to confuse someone.

So it seems further away than it is because we have a holiday to go on and enjoy before then but the second we get back it'll be our focus. He doesn't know anything about it obviously and all of a sudden we have to make that horrible journey back to hospital. I'm dreading seeing the 'why?' look in his little eyes when we have to leave in him the theatre room again but we'll have to be strong and we'll get through it because that's what people do. It's called 'manning up' or something. Personally I'd rather fast forward the next month (apart from the holiday) and wake up in the middle of July.

Here's a picture on the palate and what's going to happen to it. And if you're having trouble sleeping, this article on Craniofacial, Cleft Palate Repair is the number one organic search result when you Google 'cleft palate repair surgery'

Experiment

*yawns* we're trying something new, nothing kinky you understand, but in order to give us a chance of a lie in (yeah right) or rather a reasonable amount of sleep, we're changing things up a little.

As you're bored numb from all my lack-of-sleep entries, you'll know Jake goes to bed at 7pm after a wash and milk. This is the most consistent part of his life so far, never a whimper, he goes down without a fight every night. It's been a part of the day we cherish as it allows us to do normal stuff and gives Clare three or fours hours off.

Seeing as he's gone back to waking up at 4am every night, we've taken the measure of keeping him awake longer in the hope it'll put the same time back on at the other end. Last night was the first try and he went until 6am. Tonight is my shift (how I long for the old Friday nights) so I may very well try to keep him up until midnight!

Personally, I'd have him cry for an hour and half when he wakes up as I believe he'd quickly learn that milky time was a way off, but Clare worries about the neighbours and our sanity. It's a tricky call but everything's worth a try.

Will let you know how we get on.

We're off to visit Cosby baby boy number 2 on Sunday and are very much looking forward to it. No name as yet, but I hope to be able update the blog on that subject very soon. Today, Cosby senior?!

Smile Pinki documentary coming soon. Hopefully

HBO are showing the full award winning documentary in the US in June and I hope it'll come to UK tv soon, but for now here's the trailer.

More info on the Smile Pinki website

Brilliant - Jessica Simpson's acting shines through!

If you can watch this without clenching your bum cheeks, you're doing better than I did. Obviously a great cause but if there's an award for most fake, hammiest, fingers-down-your-throat speech, Jessica wins it hands down! A real cheese fest.



I've often said that the lord makes me want to sing! I know I shouldn't take the p&ss but purlease.

Below is a link to Operation Smile's youtube channel as they didn't provide the embed code. I don't know much about them and it might make me a traitor to the Smile Train but they're obviously doing good things. The main video on the site is about a week back in 2007 when they performed a truck load of operations with everyone pulling together. It's put together in the familiar charity video kind of way but if you leave your cynicism at the door for a moment then I suggest you watch it and see how many good people there are doing good things and in many cases, for free.

http://www.youtube.com/createsmiles

Bank holiday, Tweeting & a baby boom BBQ

We had a great long weekend and saw lots of people but Jake's been a bit ill and incredibly, not sleeping well. We had a BBQ, hosted by Will and Maria for the NCT group and it was lovely but we had to go after a couple of hours as Jake had a temperature and went all floppy. I can't stand his crying but it's actually worse when he doesn't and looks limp and sad. We Calpoled him up and it brought his temperature down but it didn't help that it was also the hottest day of the year.

He was a lot better on Monday but still not right and his daddy had caught man flu over night. I remember working with a guy who had more sick days than I can remember as he was constantly either the incubator for or the taker onner of his kids ailments. No sooner had he come back from being sick having caught something from child one than he'd go lame again having caught something different from child two. It doesn't bother me too much as every time Jake gets over something he's getting stronger and developing a tougher immune system. If that puts me out for a bit then so be it.

So then, Twitter, what's that all about? I like to dabble in anything new on the web and some things grab me more than others. I first looked at
Twitter a couple of years ago when it was barely out of Alpha testing and my initial thought, like most people's who don't quite get it, was 'WTF?!' and similar. It seemed like a place for self indulgent celebrities who could gather armies of 'followers' to dull their insecurities and feed their egos.

I really couldn't care less what Stephen Fry is having for breakfast but for some reason I 'follow' him and a few others. Slowly though it's shown me it can be useful.

Recently the Smile Train started following me. Someone at Smile Train HQ had the good idea of searching Twitter for everyone that donates. It looks like they were pretty successful as they're currently following 1,115 people, many of which I guess will be regular monthly donators. You know how much I think of the Smile Train but this is really good PR made possible by a new technology. This is the essence of web 2.0 which I witter on about to anyone bored enough to listen. This is also what Jeff Jarvis witters on about to the thousands of people who hang onto his every word. This is how companies who take our money should be working. Removing the faceless corporate barrier and standing side-by-side with their customers who effectively own their brand anyway. Companies handing over control to its trusted patronage will survive and those who operate behind closed doors, too worried to hand over power, will not and it's as simple as that. It might take a generation to do it but it will happen, mark my words.

Anyway, the point is that after I updated the blog having received the letter from the Smile Train, I tweeted (!) @smiletrain (which is how people know you're writing about them) and the Smile Train promptly retweeted (again !!!) what I wrote. Retweeting is when you cut and paste something someone you're following wrote and put it on your timeline so people who are following you (1,115 in the Smile Train's case) get to see it. Then one of the Smile Train's followers also retweeted it and she had something like 1,600 followers who would all now see that she had also posted it...a retweet is like the best recommendation you can get, especially when it's from a stranger. After this exchange the blog got almost 100 new hits and I would imagine they were very relevant hits based on where they'd come from. Anyway, my jury is still considering its verdict on Twitter but it has shown me very quickly how powerful it could be. It's perfect if you have something to say like promoting a blog update but if you just want to know the colour of Ashton Kutcher's pants today, you're just a weirdo.

This brings me onto Facebook. I'm a fairly prolific Facebook user and why not? It's bloody brilliant and a perfect way to stay in touch and share stuff. Almost everyone I know uses it and it's hard to imagine an Internet without it. Nothing comes close in terms of seeing other people's photos and what they're up to. I can justify my time on the site as we use it commercially as well. We've developed apps and pages for clients to integrate with their websites and therefore need to know absolutely how it works. We've also used it to find a member of staff which saved us around £5,000 in recruitment fees.

People tell me I'm on Facebook a lot and to be fair, I am, but I always reply 'how do you know?'. If they're seeing me making comments and posting photos then they're obviously on it as well, the only difference is that I participate and that's kind of the whole point isn't it? If no one did anything then the site would be empty!

Anyway the whole reason for this is that two of my friends are pointedly not members of Facebook. One is a recovering addict and the other refused from the outset, a virgin if you will. Both of them are staunchly refusing to buckle and face the abuse that such a highhorse dismount would generate, but both lament the fact that they don't get to see everyone's pictures! I was like that about iPods...I'm not an Apple guy and had many mp3 players in the past before finally succumbing and buying an iPod. Why did I buy it? Because it was the best on the market by a million miles. I got some abuse but it quickly faded. I would imagine and hope that Malos and Mullet will buckle and join up soon. Or perhaps they already have under a pseudonym! In the mean time here are some photos just for them (everyone else has already seen them!).

Right, must do some work.

This first picture is our friends Sarah, Hamish and beautiful baby Sadie, who I'm very proud to be god father to. Hamish is also Jake's god father but didn't get a mention earlier on the blog as we hadn't told him at the time of writing!

Smile Train correspondence

Here is the letter I got back after I started donating:

Dear Mr. Fernie,

A few months ago, I sent you a thank you letter and in it I promised to send you a photo of a child we were able to help with your donation. I am sorry it took me so long but I did not forget.

Please allow me to introduce Smile Train patient Errol Ayson.

Errol is a one-year-old boy who lives in one of the poorest areas of the Philippines. His operation was performed by Dr Gilbert Esquejo on 19 February 2009 at the Philippines Band of Mercy Hospital. As you can see, his surgery went really well. It took less than an hour to put that big smile on his little face, a smile that will last for the rest of his life.

Errol does not know how lucky he is.

Most children born with clefts in the Philippines never receive surgery because they are too poor to ever afford it and there are no government programmes that provide it. 25% of people in the Philippines live on less than £1 a day, and most of the children we help live on much less. Without the Smile Train programme - and without donors like you - Errol would probably have suffered his entire life without ever receiving surgery.

I hope that you put these pictures up on your fridge or somewhere else you can see them so they'll be a happy reminder that there is a little boy half way around the world smiling today thanks to you.

On behalf of Errol and all the children we will help this year, I thank you.

With the economic crisis and our donations being down %22, your generous gift could not have come at a better time.

Thank you,

Brian
Co-Founder / Chairman.


Powerful stuff, eh? What other charity can do so much for so little? I doubt my £10 per month could have bought me more satisfaction with any other charity.

The other day I had a new hands free kit put in our car that also hooks up to an iPod. Annoyingly my iPod is the generation just before the oldest ones the hands free kit supports. So I went straight out and bought a shiny new iPod Nano in glorious orange and it cost £106. I'm not loaded by any stretch but I could afford to do that pretty much without thinking. £106 to someone like Errol is utterly unthinkable. When you can't even afford to have your face fixed, owning a new iPod must seem as unlikely as buying a Rolls Royce or flying to the moon.

Thank God for the Smile Train and big up yourself Dr Esquejo.

Here is the letter and before and afters of little Errol.

Talk about the feelgood factor!

What Now?! - one year on

Well, actually, tomorrow is the official anniversary of this blog but the reason for it is a year old today. It's gone past very quickly and the memory of the moment the sonographer said that all wasn't quite as it should be will be with us forever. I can still remember the warm feeling I got, as if about to faint, very clearly. We've come such a long way since.

People always say that a year goes past quickly. This is true in some cases but for us, it's been while since a year went fast. The reason a year flashes by is normally when nothing major happens. The days, weeks and months all blend into one another. Major events such as a house move, a job change, a marriage, a birth etc all provide big contexts to a given year. Since 2005, I've set up, run and sold a business, moved jobs 3 times, lived at 4 addresses, planned and had a wedding, Clare's been pregnant (twice), gone through the cleft thing and had a baby. All of these events have kept us on our toes so each year that passes seems eventful enough so as not to go by without notice. The next year maybe more likely to flash past and I for one will welcome that - no more nasty surprises, major events please, just some stability and predictability!

A busy day on the blog today but there's a lot going on.

Happy Birthday to What Now?! Thanks for reading.

Another boy!!!

Just got the fantastic news that Cosby Jnr number two (the one I first mentioned here) was born last night.

Candy gave birth to a little baby boy at 2.52am weighing 7lbs 12oz and 7 days early. There had been some complications early on but everything sorted itself out and Candy was able to have the home birth she wanted all along.

I was only playing Call of Duty online with Ben 12 hours ago, when he went offline to give Candy a birthing massage! I guess it did the trick as we've just got the email to say that all went smoothly and the new boy arrived safe and sound.

Massive congratulations to Ben, Candy and Noah who have now become the full nuclear family (whatever that means - actually, I think it means you don't have to have any more kids!).

Can't wait to meet the little fella. Wonderful news.

Friday's child is loving and giving.

Life isn't about waiting for the storm to pass; it's about learning to dance in the rain

Guess what everybody, it's another episode of the 'Jake's never gonna sleep properly' show.

I have a slight sore throat which is making things worse, but I can honestly say that today is the tiredest I've ever been. So tired in fact, that I don't even care that tiredest isn't a word. It might be but I can't be bothered to check.

Friends of ours had a night nanny for a night when their daughter was about Jake's age and had a similar sleep pattern. It was expensive but I'm seriously considering it. The idea of having a full night of sound, deep sleep is so seductive, I'd give my life savings. If I had any.

Jake was officially a 'shit' all day yesterday, firstly according to Clare's daily report which I get when I come home and then secondly as witnessed first hand. He didn't eat much all day, didn't want his milk, seemed constipated (although not when I checked!) and then slept like a woman going through the change.

Awake, screaming at 1.50am, again at 3am, fed at 3.20am, berserk at 3.50am and eventually slept from 5am to about 7am. So I managed around 4.5 hours of broken sleep and again have woken up feeling like I've died. I mentioned to him this morning that he was 'ruining my life', mainly to get a laugh out of Clare (but perhaps never a truer word than is said in jest) and he smiled at me. The bugger. What is it with that smile which changes my mood so? How can he go from villain to saviour with one tiny movement? It seems that however far he pushes us, how ever much we want to be angry, he can bring us back into line with one solitary action.

I don't know how I will ever successfully discipline him. Last night I watched the second episode in a rerun of series 1 of the Inbetweeners, a very funny show about 4 seventeen(ish) year old lads who don't fit in and follows their adolescent antics. One day they all skipped school, got drunk, called their best mate's dad gay, vandalised another's drive way, puked on a prospective girl friend and ended up getting caught red handed. Sat there taking their lecture, Will (the sensible one) gave an implausible excuse that they were all alcoholics and could only get through the hard times ahead with the love and support of their parents. The father who was in charge of the dressing down tried to continue his discipline but just laughed. That'll be me, I reckon. Not that I want Jake to become a tearaway but as long as he doesn't break any major laws or do anything nasty, I can't see how I'll be able to stay angry for too long. I'm not really a grudge person and I am pretty forgiving anyway but I will have to practice my serious face so it seems genuine when he gets caught drunk and disorderly later in life (like his dad did!).

Is coffee the answer? Or rather the problem?

I like keep an eye on all things cleft via the Google News reader which is pretty good at feeding stuff through. I've decided that I should link to some of the articles which come up. Some are interesting and others like this one seem crazy.

This report claims that;

'Women drinking a daily cup of coffee during the first 3 months of pregnancy were 1.39 times more likely to have a baby with harelip and the likelihood increased to 1.59 for women who drank 3 or more cups of coffee a day'

Given that Clare has never drunk a cup of coffee in her life, this made me smile. Every day there's a new report saying that tomatoes give us cancer, mobile phones fry our brains or that too much water makes us urinate and it makes it hard to know what to believe anymore.

The article also goes on to say;

'Recently, a study showed women drinking more than 3 cups of coffee a day had 17% smaller breasts.'

Which says it all really.

Smile Train delivers!

I wrote a few weeks back about the Smile Train and all the good work they do. I make a small monthly donation as the charity make a little money go a long way. Just $250 is enough for one person to have a lip or palate repair. Many charities have huge administration overheads so a large part of any donation goes towards running costs. Not so, the Smile Train. Their methodology is such that they have a tiny staff and therefore the vast majority of all money received goes towards training local doctors, nurses and surgeons so that they can carry out surgeries on a self sufficient basis.

Anyway, part of the Smile Train's promise is that they send news shortly after you start donating of someone they have helped. A couple of weeks back we got a letter from the charity detailing the story of a young boy who has now had his lip repaired. Even though he is on the other side of the world (and even further away metaphorically), I can imagine his parents had the same emotions as we did. Perhaps even more so given that until the Smile Train came along, there was no hope.

A before and after photograph was sent along with the biography which made it all the more real. I will transcribe the letter and scan the photos on another post in a day or so.

Sleep, a new low

You're probably as bored of reading about Jake's sleep pattern as I am moaning about it but at 2.30am when he's screaming I start making up sentences for this blog which would go to waste unless I posted them.

So after 8 and half months, we're still taking 2 or 3 steps backwards for every 1 forward. A few weeks back I wrote that we were enjoying an almost perfect sleep cycle. Jake would go to bed, as he always has to be fair, at 7pm and then go through to at least 6am and sometimes 6.30am and on one glorious occasion, 8am. I remember writing that we were almost there and it wouldn't be long until he'd do 7-7. What a fool. As if.

So for the last week, he's woken at around midnight, but unlike when he used to wake, he now is inconsolable. A couple of times we left him to cry it out ('controlled crying' is the PC term) and it sometimes worked. It is very difficult to continue to do this when you live in a semi with thin walls. I don't much care for our neighbours but there's a limit. We'll leave him 10-15 minutes but after a while the desire to get back to sleep is greater than enduring the screaming in the hope it might help future nights. So, typically Clare will get up and a combination of shushing and humming Amazing Jake (Grace) which sometimes works so as he goes back to sleep for anything between 20 minutes and 5 hours. Lately he's been getting up at 5, we feed him and then he'll go back to sleep until after 8 - it even made me late for work once. This is actually acceptable as it's still possible to get 7 or even 8 hours sleep without having to go to bed at 9pm.

Last night however, represented a new standard even for Jake. Awake at 20 past midnight, controlled crying for 20 minutes, followed by apoplectic rage for a while, then Clare took him downstairs to watch TV. This calmed him down, however the rage returned when she tried to put him down again. Eventually she fed him and he started crying again. She changed his nappy, he went berserk. We got the hint when the neighbours started slamming doors at 2.15am! Eventually he dropped off around 3am. The problem with this prolonged screaming is that by the time he's fallen asleep, we're so awake and wired from sleep deprivation, we can't get back to sleep. When he woke up at 7, I felt like I'd woken up dead. Today is going to drag and I'm sending Clare to my sister's house tonight so she can get a full night's sleep. Although I'm awake through the night when he is, not having to get up and placate or feed him makes things easier for me. I have never done the overnight shift on my own before and it's about time but I will be having a word with him before he goes to bed and I suspect, our best friend Mr. Calpol will be involved!

Christening

Sunday was a great day. Jake was the dream child and behaved perfectly for his baptism. He was fascinated by the vicar when she was blessing him with the holy water and not at all miffed that she messed up his hairdo. The service was just for him after the main service, which was nice, I always feel that it's a bit of a job lot when several get done at the same time. That's the advantage of a village church.

Everyone turned up on time despite a road block and diversion and it was great to see so many people dressed in their suits and looking so well. The sun shone all day long as it did on our wedding day and I think everyone had a great time. The plans were to have it indoors and we laid the 60 rounds of sandwiches, quiches, sausage rolls, canapes and bruschettas that we'd slaved over out in the dining room but got hint when the house was deserted. What was meant to be help yourself turned into a waitress service, but that's o.k, it all went. Well none of the ham and cheese went, I think a bit of pickle or tomato to add colour would have seen them go.

All the kids, twice as many as the last christening I went to, played on the lawn and we all drank beer and wine. I gave a very impromptu speech and didn't do Jake justice. I quite like a speech but only if I've had time to prepare; a raconteur, I am not. Anyway everyone had a good time and people were mostly gone by 6ish. He got some great presents, most of which will require me putting up more shelves. From silver trinkets and classic book sets to bears, framed poems, stuff spelling 'Jake' and games. Best of all no plastic! We've decided on Jake's nursery which is a Montessori place and they abhor plastic toys like I do. I was skeptical about Montessori as it's a bit pretentious going off the beaten track but having looked around and seen how happy the kids were it all makes sense. Obviously because they only use wooden toys and learning aids!

So now Jake is officially christened! Here are a few pics.