I promise I have had good intentions to start writing on here again, but I guess when things are plodding along nicely, there’s not much to say! And that’s not saying that things aren’t plodding along nicely - they are!
So, today Corey is in having his knee surgery to correct his “knock knees”. Common in MPS. Probably common outside of MPS too!
It’s called 8 plate surgery as they use a plate and 8 screws, about the size of a paper clip. They put this into his tibial growth plate which inhibits the growth of his tibia, but allows his fibula to continue growing which will, over time, straighten up his legs. In addition to this, which we only found out today, he will be having a screw put in each ankle bone to help guide that growth too as his ankles we’re growing inwards too.
Eventually, in a few months or a year or so, he will have all of these removed, once they have done their job.
I wanted to write on here today as it’s hard to convey feelings in a Facebook post!
Corey had his first anaesthetic when he was less than 4 months old to fix an inguinal hernia. Pre diagnosis of MPS1, pre knowing anything and first time parents. Shane had to take him in as I couldn’t face the thought of watching him fall asleep.
I’ve actually lost count of how many anaesthetics he has had now, Shane will find that extremely hard to believe! Me and all my hospital diaries and notes etc but we’re definitley in the twenties, I think I stopped counting at about 24 or was it 28? I have been there for the majority of those, not because Shane hasn’t wanted to be, he’d be here in a flash, for one reason or another it’s logistics, we’ve done a few together and Joshua doesn’t come up when it involves an anaesthetic as I can’t leave him on the ward and take Corey down and Joshua doesn’t need to see his brother in that situation.
Well today, on anaesthetic whatever number, nearly 10 years on from his first, was the first time that he didn’t cry, he didn’t fight, he didn’t struggle, he breathed in the fumes and fell asleep. I haven’t cried when he’s gone under, but I nearly did today, out of pride. I was literally bursting with pride at how well he did.
To me he is the epitome of a hero. He didn’t ask for any of this that he has had to face but is so brave and courageous in how he deals with it. When life throws so much at you and you just get on with it with a smile on your face, that is strength. And he has no idea how strong he really is, because that’s just life. And life can be unfair and everyone has their battles, we’re just fighting ours whilst everyone else around us is getting on and fighting theirs.
This is the first time he has had full awareness, full disclosure and knowledge about what was going to happen. He’s known for a year or so that he will have to have this operation, we just didn’t know when. He’s asked questions about it along the way and absorbed the information we have given him, he’s asked the doctors questions and been happy to let everyone know that he was having an operation! He even counted down the days, like he did for his birthday! I’ve never known a child count down with excitement about a hospital trip, but then maybe his mind and body can’t tell the difference yet between excitement, anxiety and anticipation.
So, as I sat with a coffee and started writing this, he has since come back from theatre in pain, so received paracetamol, diclofenac and tramadol. If his pain worsens he can have oramorph, so he’s on all the good stuff!
He’s eaten and drank water and we have to wait for a physiotherapist to visit us before we’re allowed home. He’ll be given a walking frame and has to take it easy for a week or so. He can weight bear as and when he can tolerate it but will be sore for a few days. Now he’s actually fallen asleep!
I think that’s alll for now, thanks for reading, and as always I’ll try and write more often!
Teresa x
It’s called 8 plate surgery as they use a plate and 8 screws, about the size of a paper clip. They put this into his tibial growth plate which inhibits the growth of his tibia, but allows his fibula to continue growing which will, over time, straighten up his legs. In addition to this, which we only found out today, he will be having a screw put in each ankle bone to help guide that growth too as his ankles we’re growing inwards too.
Eventually, in a few months or a year or so, he will have all of these removed, once they have done their job.
I wanted to write on here today as it’s hard to convey feelings in a Facebook post!
Corey had his first anaesthetic when he was less than 4 months old to fix an inguinal hernia. Pre diagnosis of MPS1, pre knowing anything and first time parents. Shane had to take him in as I couldn’t face the thought of watching him fall asleep.
I’ve actually lost count of how many anaesthetics he has had now, Shane will find that extremely hard to believe! Me and all my hospital diaries and notes etc but we’re definitley in the twenties, I think I stopped counting at about 24 or was it 28? I have been there for the majority of those, not because Shane hasn’t wanted to be, he’d be here in a flash, for one reason or another it’s logistics, we’ve done a few together and Joshua doesn’t come up when it involves an anaesthetic as I can’t leave him on the ward and take Corey down and Joshua doesn’t need to see his brother in that situation.
Well today, on anaesthetic whatever number, nearly 10 years on from his first, was the first time that he didn’t cry, he didn’t fight, he didn’t struggle, he breathed in the fumes and fell asleep. I haven’t cried when he’s gone under, but I nearly did today, out of pride. I was literally bursting with pride at how well he did.
To me he is the epitome of a hero. He didn’t ask for any of this that he has had to face but is so brave and courageous in how he deals with it. When life throws so much at you and you just get on with it with a smile on your face, that is strength. And he has no idea how strong he really is, because that’s just life. And life can be unfair and everyone has their battles, we’re just fighting ours whilst everyone else around us is getting on and fighting theirs.
This is the first time he has had full awareness, full disclosure and knowledge about what was going to happen. He’s known for a year or so that he will have to have this operation, we just didn’t know when. He’s asked questions about it along the way and absorbed the information we have given him, he’s asked the doctors questions and been happy to let everyone know that he was having an operation! He even counted down the days, like he did for his birthday! I’ve never known a child count down with excitement about a hospital trip, but then maybe his mind and body can’t tell the difference yet between excitement, anxiety and anticipation.
So, as I sat with a coffee and started writing this, he has since come back from theatre in pain, so received paracetamol, diclofenac and tramadol. If his pain worsens he can have oramorph, so he’s on all the good stuff!
He’s eaten and drank water and we have to wait for a physiotherapist to visit us before we’re allowed home. He’ll be given a walking frame and has to take it easy for a week or so. He can weight bear as and when he can tolerate it but will be sore for a few days. Now he’s actually fallen asleep!
I think that’s alll for now, thanks for reading, and as always I’ll try and write more often!
Teresa x
