Cleft gum repair

Today's the day of the bone graft/ gum repair. Feels like a long time coming; since the flurry of activity on this blog in the beginning, life has just become life and cleft stuff doesn't really feature. But I do remember thinking about the nice long break between the palate op and the one Piet Haers is about to start in about an hour from now. That's just under 8 years which has passed in approximately four and a half minutes and here we are back in the same ward of the amazing Lady Evelina hospital waiting for hopefully the last major operation of Jake's cleft journey.

The surgeon will make an inch long incisions into his left hip and borrow a bit to put into the gap he left (on purpose) back in 2009. This will fuse with the rest of the gum and give him a strong foundation for his teeth which are slowly getting straighter and straighter via the brace. I'd imagine that'll come off within the not too distant future.

It's different this time as we're perhaps a little less worried and Jake is more worried; well, he wasn't at all worried last time on account of his being nine months old and had no idea what day it was let alone that he was having major surgery. Less worried is maybe not the right expression and perhaps more experienced is how we feel compared to last time. Jake's main concern is the lack of football for six weeks after the operation and he's been typically cool about the whole thing apart from understable concerns over any pain he'll have. When he wakes up he'll have a morphine button to self medicate through the night and then should be ready to come home tomorrow tea time.

I'll post some photos later.

Cleft lip photos

Here's a timeline of what to expect from baby to (nearly) 8 years old.

baby

24 hrs post op

3 yrs old

5 yrs old

7 yrs old

nearly 8

What to do after you get 'the news'

Hi new visitors. If you're here, it's quite possibly because you just googled 'cleft lip blog'. Just like I did a little over 8 years ago. I didn't get much so I started this blog. In the first 4 or 5 years after starting the blog I had loads of emails from people who went through the same journey of discovery.

Recently I realised it's been a while since I've had any emails. Firstly I checked my settings and then my spam and still nothing. I think it's because it's difficult when you land on a page about me riding a bike in Wales to realise there's a few hundred thousand words earlier in the blog which may be more relevant to your google search!

So, if you've had a recent diagnosis of a cleft or your baby was recently born with one, here's what to do:

1. don't panic (easy for me to say I know, but trust me please)
2. believe me when I say everything is going to be fine (ditto above)
3. visit the post I wrote about receiving the news about a 'cleft lip and palate diagnosis'
4. visit the post I wrote about the 'cleft lip repair operation'

I've also seen that lots of the original photos I found on the internet are now missing from the early blog posts so I will post some more before and after photos again soon which should hopefully reassure you that your babies and children will be absolutely fine.

If you want any advice at all, please drop me an email.

Good luck

James

Wales Velothon

I recently completed the Wales Velothon, an 86 mile cycle event through the Brecon Beacons. The hills were not fun but I managed it in just over 7 hours.

At mile 30, it started to rain, biblically, and I wanted my mum. However I kept telling myself ‘it’s all for the kids, do it for the kids’. Amazingly it stopped raining after about 20 minutes and everything dried off before ‘The Tumble’, the first of two notorious climbs. It’s a 4 mile, 8% gradient zig zag up a picturesque hill. I managed the zig but got off and pushed half way up the zag; not as hard as cycling but still knackering!

Then it was a mixture of fast downhill, gentle downhill and doable uphill until, Caerphilly mountain. MOUNTAIN. As I arrived I saw half the people cycling and half pushing; considering this was the bottom of the mountain I felt a dismount coming on and ended up pushing all the way up.

As I got to the top, I heard ‘it’s now 12kms downhill to the finish line’ and felt a wave of euphoria. Imagine my surprise then when at the bottom of the first descent we turned left and saw yet another bloody hill! So, not all downhill but knowing it was nearly done and I’d actually manage it after doubling my previous longest ride just a week before was a great feeling. Me and my co-rider crossed the finish line with an awkward fistbump slash high five desperately trying not to crash.

In all we raised £1500 for Great Ormond Street and my work donated the enclosed £250 for Smile Train. Jake was born with a cleft lip 8 years ago and the NHS did an amazing job; to think that other kids around the world don’t get the same support is heart breaking especially when it’s such a simple issue to fix. Anyway, I’m happy to have done this and also that someone, somewhere will be the beneficiary. 

Knackered on The Tumble

7:02 - roughly twice as slow as the pros. Gotta start somewhere.

Jake at 7

As ever, it's been a while but quality beats quantity; could be this blog provides neither but the lack of posts is, hopefully, an indication for any new visitors with recently diagnosed clefts, that the news is not as bad as you might think.

2008 (from May) - 44 posts
2009 - 74 posts
2010 - 19 posts
2011 - 14 posts
2012 - 6 posts
2013 - 5 posts
2014 - 5 posts
2015 - 2 posts (inc this one)

...tells its own story I think. The first 18 months were busy on here for a few reasons: firstly we were going through the motions all new parents do when they have a cleft diagnosed: scans, specialist visits, operations, checkups etc and secondly I really enjoyed writing it all down and the feedback I was getting. I also had a lot more time, what with only one child and a baby at that. You really don't appreciate how much time you wasted until your a few years into having kids. Don't let that stop you wasting it though, doing nothing is hugely underrated.

In terms of cleft news and Jake's development, the first thing to report is that he's an exceptionally happy 7 year old who's into every sport he can get involved with, a maths genius (obvs), doing well in reading (hand writing is not great though) and seems to be loving life. He is aware of his cleft and when I asked him if others notice it he told me they do and sometimes ask him why he's got a scar and he said 'I tell them it's just my lip, I was born with a hole in it and had an operation to fix it and that's why there's a scar'. Nearly broke my heart! I'm sure he'll have to deal with an arsehole or two who are less inquisitive and more shithead-like in their enquiries but which kid won't have to deal with that? Jake will be ready for it; not like me when kids were balancing briefcases on each shoulder and taking the piss out of my big ears. Honestly, children can be such tossers.

His hearing isn't great and the glue ear is back. He is going to have to have a hearing aid for at least six months. Again he's totally unfazed and is looking forward to being able to turn down crying babies! I do hope it's just six months but what will be, will be.

The big op, which will take bone from his hip to be grafted onto his gum isn't going to be until next year now and while I'm know it'll be horrendous for us, I'm sure he'll take it in his stride and just be looking forward to the presents and time off school.

So, nothing's changed since the last post really but it's important to keep posting shots for anyone worried about the 'after' photos.

Any questions, feel free to get in touch.

Cheers

 

five years ago with the future wife

 

two months ago with the old man