One year post-op

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A year on from his operation for Sagittal Craniosynostosis, (in medical terms it was a Subtotal Calvarial Remodel, subtotal because his forehead was untouched) to separate the skull plates that were prematurely fused at his birth Billy is doing really really well.

His giant ear-to-ear zigzag shaped scar has healed and faded so well that it is not visible under his hair (unless of course you go looking for it!) But even then it is much less obvious than it has any right to be, testament to incredible skill of the surgical team at John Radcliffe.

OK so his head is still a little on the large size, finding jumpers that will go over his head and hats that will stay on is on occasion more than a little tricky. We got some odd looks in a clothes shop the other day from other parents when I was telling him that we had to try things on to see if we could get them over his head! But I guess that’s a good thing it means his head doesn’t look big and it is definitely without a doubt much more ‘normal’ than it was at the time of his operation and that abnormal growth would only have become worse and more damaging over time.

Now though Billy’s head is growing nicely in it’s ‘new shape’ and slowly over the last year it has sunk in that he really is OK, that as far as we can tell at the moment the craniosynostosis has had no negative affect on his brain function (always a big worry with a constricted skull) and I feel very very lucky to have such a brave and wonderful little boy who has so far at least come though everything life has thrown at him with flying colours.

Anyway enough about his head and a little more about the boy himself. Billy is thoroughly enjoying being in the two year old group at nursery and the effect it has had on his speech is incredible, I can’t keep up with the number of new words he comes out with daily and best of all it is now possible to have a ‘proper’ conversation with him. My favourite response of his lately was when I asked him where his juice was and he looked around thoughtfully before saying “umm somewhere” I had no idea he even knew the word!

He’s not perfect of course! Like all toddlers Billy is perfectly capable of making his feelings on something known, many a morning time has to be spent wrestling a suddenly floppy boy into his coat, or his inner green-eyed-monster surfaces when he suddenly realises the cat is having a cuddle and he isn’t – we’re working on it though and the poor old cat doesn’t get chased away as much as she used to (he’s learning that chasing her away doesn’t get him a cuddle just told off!)

Like all of us Billy has his favourite things and hovering around the top of the list is his love of all things Postman Pat! He loves the Pat toys he got for his birthday so much that we have had to introduce a bedtime for his Pat toys after dinner or he would stay up quite happily playing with them until he could no longer keep his eyes open. Now first thing in the morning he looks at us hopefully as he asks ‘Pat toys up now?’ before he takes them down from their special shelf.

So that’s where we are now, to look at Billy you would never know what he went through a year ago, it feels like yesterday and a lifetime ago that we visited him in the PHDU after the operation and I will always be incredibly grateful to the amazing team at John Radcliffe who have given our boy the best possible care every step of the way.

I’ll stop rambling now, I think this is probably the longest update I’ve ever written. Given how rubbish I am at updating the next one will probably be around Christmas!

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A whole year off!!

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We had a week of visiting hospitals last week as Billy had his four month post-op check for his head at John Radcliffe in Oxford and a check on his kidney in Southampton.

Good news in both cases 🙂 the craniofacial team at the JR are really pleased with him, his head is now within normal parameters and we don’t have to go back for two years! Think I may have done a bit of a goldfish impression when they said that but past cases suggest that as Billy has no problems now they won’t develop in the next couple of years (skull wise anyway!) so in the words of his consultant ‘there’s no point us coming in just to say hello’ we can still call if we have any concerns obviously.
Southampton General also pleased with Billy’s kidney. The ultra sound showed that the kidney that had the blockage is still a bit larger than his ‘normal’ one but that was expected and its no longer messily dilated and causing problems, so back in a year the check on progress there.

That means a whole year without a hospital appointment (hopefully!) It’s taken a while to sink in but now it has it feels great!

Doing well

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Firstly apologies for the lack of update other things took over for a while there!

Billy is home and has been since the Monday after his operation so we were only in Hospital for five days!

He is doing amazingly well and if he didn’t have a large zig-zag scar running across his head from ear to ear you would never know he had had surgery so recently.

Being Billy he’s also learnt to walk this week! The photo was taken yesterday. So of course I’m spending half my day telling him to ‘be careful’ or ‘watch your head’. Think I must be working on a we grey hairs!

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Success!

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Billy is now in PHDU after a successful operation, looking a bit swollen but with a new head shape and his large skin tag removed from his ear as a bonus!

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Operation time

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Billy has just gone through to theatre – now we just have to wait

Pre-op tests

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Half way through our second day of pre-op testing. We have seen so many people I can’t even remember half of them. Billy had his eyes and ears tested yesterday and blood taken, we also met with the geneticist. This morning we have spoken to his consultant seen he developmentalist and the speech and language therapist. Billy has for the most part been a real star and has charmed everyone.

A new operation date!

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A couple of days ago we had our new operation date confirmed as 15 November. It’s only a week later than our original date so really pleased with that.
Cue a quick trip to the doctors to have his pre-op swabs taken (needed to be done roughly 2 weeks before op). The poor nurse had a real look of panic when she saw the she needed to take eye, nose and throat swabs from a toddler!
To be honest I was with her on this one and had gone fully prepared for an unpleasant half hour or more of trying to hold down/ distract a screaming Billy. Much to everyone’s surprise and relief he was a perfect angel. Just let her do it while sat on Daddy’s lap with me playing with his light-up car and he didn’t even cry! He was duly rewarded with his favourite ‘sweets’ and everyone was happy 🙂

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