Doing well

1 Comment

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!





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!


Operation time


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

Dad Post – changes



I think I’ve said this before, but I just want to let people know this post has been written by Dad, so be nice!

As is the case with almost every visit to a hospital, plans change. As has been my experience, every time the plan changes, people say that this is definitely the new plan and everything will be the same from this point on. Until something changes. I just wanted to chronicle some of the changes to the plan that can happen in one 12 hour period.

There was some uncertainty as to what they would actually be doing for him. First they were saying they would operate on his forehead as well, then they said it wasn’t too bad, then they said they might still need too. In fairness, they have always said the exact outcome if the operation will depend on what they find when they are doing it.

We still don’t know if there’s a free high dependency bed for him so the whole thing still might not happen.

They called us really early saying ‘we usually talk you through things before you meet the doctor to go through the risks and nasty stuff and you’re booked to see him at 11, but he’s decided he wants to meet you at 8am, so can you be at the ward for then?’

This evening we went down to the main ward to admit him over night only to be told they don’t have a bed they think would suit him there and can we take him up to our room whilst still coming down to get some medication he needs the night before the operation.

I really want to point out that every member of staff has been amazing so far, and each one has helped us through the changes and given us what we need to keep going.

I’m starting to get a bit nervous, and the changes aren’t helping, I’ll admit that. My wife is saying I’m just being crabby. It’s a fair point, i probably am. Still, I’m usually someone who is happy to live without a plan, but this time I’ll admit I’m worried something will slip between the cracks in the normally seamless machine created by the sudden changes in temperature and direction.

Pre-op tests

1 Comment

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.

Fireworks Billy style!

Leave a comment

Billy’s first piece of art work he’s brought home from nursery – glittery fireworks 🙂


A new operation date!


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 🙂