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.

Official Jake

So on Sunday, 50 or so of us will gather at the church that Clare and I were married in and Jake will enter the Christian realm. I really am not religious but I am a traditionalist and do respect the Church as an institution; I know a lot of people get a lot from it. Before we got married I probably went to half a dozen services and Clare the same amount again. I did it out of respect. This church was equidistant from the homes we grew up in but nowhere near where we lived. Well at the time it was very close as we were camping down in my parents' place but that's a whole other story. So we went out of respect for the people who go every week but I wondered if that made me more of a hypocrite than not going at all. Was going in order to pretend I was holier than thou in order to put up a facade for the devout incumbents worse than just admitting I was there for the nice photographic back drop? Actually, it turned out, no. I am a respectful person in the main and after a bit of self reflection on the matter, the respect for the folk, I deemed, was genuine in spite of any feelings of ambivalence towards the church and that, I decided was worthy enough. I told you I brood too much.

That said, the church can be somewhat outmoded and automatically thinks that young folk who don't attend weekly services are incapable of salvation and akin to Beelzebub himself. Under what felt that police interview room interrogation I did feel like saying 'do you want the money, or what?' but thought better of it. The point is that the church must update itself if young people are to find it relevant again.

Anyway, I like churches because, save for one common use, they are usually very happy, sunny places on days when EVERYONE is there, not just the usual suspects. Girls in dresses and guys in suits, drinks and homemade sausage rolls and such after. I hope Sunday is sunny but forecast says no.

Event update on Monday.