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!
A blog about our son Jake, born in 2008 with a cleft lip and palate. I started it the day after the cleft was diagnosed and continue to write for people who turn up here every day after getting the same news. A cleft lip and palate is not the end of the world. Start at the first post and then read on...
Tuesday, 2 June 2009
Friday, 29 May 2009
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'
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?!
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?!
Wednesday, 27 May 2009
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
More info on the Smile Pinki website
Tuesday, 26 May 2009
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
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
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