May 28, 2015
Billy has had another check up at John Radcliffe and the team were pleased with his progress, his head is growing as it should and has maintained a good shape – even if it a little pinched still at the sides of his forehead.
He did well with the pre-school speech and language assessment to especially as he’s on the young side for them doing it – but we won’t (hopefully) need to back until after he’s started school in 2016 so he had it this visit! He found irregular verbs a little tricky (ran/run etc) but got most of the rest!
One interesting thing that came up was that no one seems to make specialised bike helmets for Cranio kids which I found surprising so if anyone does know of anywhere that was really helpful with a customised bike helmet do let me know!
The team at John Radcliffe were amazing as ever and I can’t thank them enough for their brilliant work and support.
June 1, 2014
Billy received his first ever Birthday Party invite this week from one of his friends at nursery. The party was on Saturday and he had an amazing time playing outside on a bouncy castle with his friends. In fact he was enjoying himself so much that it was hard to get him to stop bouncing and eat some of the huge array of party food the hosts had provided!
Today Billy’s Grandma and Grandad came for a visit and he loved seeing them as he always does. He was so excited waiting for them to arrive he went to the front door several times to check if he could see them coming! He had a lovely time in the garden with everyone and liked the snails we found although he wasn’t so keen on the slugs.
Grandma and Grandad were treated to a viewing of Billy’s current favourite TV show (Charlie and Lola) and Grandad was put in the naughty corner for stealing Billy’s bear! (he was allowed out again when he said sorry :) ) Just goes to show how much they really do pick up on from us! On that note Billy picks up random stuff to – today he was playing with his ‘trusty sword’ (imaginary). No idea where he got that phrase from – must be nursery :)
April 11, 2014
Billy, Craniosynostosis, letters, shoes
Billy is 2 and a half now and (possibly biased mummy moment here) absolutely amazing. He’s growing up so fast it doesn’t seem real sometimes but with that comes some incredible things like the ability to have a ‘proper’ conversation, to watch as he makes up little games with his toys or ‘flies’ around in his pretend helicopter having first put on his (imaginary) hat and coat.
He needed new shoes last week and so proud walking out of the shop in the new shoes he had chosen (a rather funky green and red pair) it was lovely to see. He couldn’t wait to show them off at nursery either!
He is like a little learning sponge at the moment adding more and more complicated words to his vocabulary and chattering away in full sentences – he really is a proper chatterbox! We’ve also started to ‘teach’ him some letters by playing with foam letters in the bath – they are really fun, just get them wet and you can stick them to the bathroom tiles (and as Billy discovered to himself!) So now when we are out anywhere and we walk past anything that has a B on it we get a delighted cry of ‘look B for Billy!’
We’ve also started with the dreaded Potty Training and so far he’s doing really well. We’ve been following his lead and have taken a fairly ‘soft’ approach to it so far in that he is still in nappies but he is encouraged both at home and at nursery to use the potty regularly. He’s a fair way off perfect but I think he uses it about half the time now and is starting to get pretty good at asking for it himself rather than being reminded (the special pot of ‘Potty Sweets’ that he gets to choose from may have something to do with this!)
So that’s us, as we are now and life is pretty good. I’ll try not to leave it so long between updates next time!
November 15, 2013
Billy, Craniosynostosis, John Radcliffe
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!
October 31, 2013
Billy, Birthday, Craniosynostosis
Hard to believe but Billy turned 2 at the weekend. Where the time has gone I have no idea! My baby is a proper little boy now, a little boy who is starting to talk in proper sentences, who has favourite toys, is sleeping in a duvet and not a baby sleeping bag.
He had a fab birthday with family visiting and face timing to share in his day. He loved his presents and has to be prised away from his new Postman Pat toys at bedtime!
July 2, 2013
Billy, Craniosynostosis, speech, talking, Words
Billy is doing really well, you can’t even see his scar under his hair and our little boy is growing up as we watch!
He’s just started putting two words together and can say his name! (proud mummy alert) So thankfully looks like we have no worries about the operation having effected his language development although there is obviously still a lot left for him to learn :)
April 25, 2013
Billy, Craniosynostosis, hospital, John Radcliffe, Kidney
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!