Post op photo update

The op was generally a success. Piet was a little disappointed with the lip revision when we went for the check up but the gum repair went perfectly. Perhaps Jake will want more surgery in his teens if it's not to his liking but that'll be his choice; unless there are any medical reasons for more surgery, it's all up to him from now on. Apart from a couple of comments (that we know about) his lip/ nose hasn't caused him any bother. Throw into that mix his hearing aids and braces, I'd say it's a case of 'so far, so good'. I'm not naive to think kids won't say nasty things once he gets into the dreaded social media years (and they are really just around the corner) BUT the school is good around bullying and inclusivity that it ought to be spotted and dealt with. He's a happy, confident and popular boy and I hope that will stand him in good stead when kids start getting shittier to one another. I suffered the odd bit of bullying at school and although I'm not the most confident person, I can't say there's any long term damage.

Anyway, here are a few recent photos.

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.