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!