28 August 2018

It’s been a while!

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

Where's the summer?

As always I have been meaning to write sooner but 3 months is a good start!

Our MPS fundraiser went amazingly well.

We raised £2510 and 7 of us are 82 inches of hair lighter!



The morning was just fantastic, so many people came out to support us and I was completely overwhelmed that it was all about Corey!  He was in his element handing out stickers to everyone as they arrived and by our calculations there were over 250 people within the 2 hours.  I can't thank everyone enough, those who came and made it such a success and to those who donated prizes and their time to help.

On Friday 13th (!) we had Corey's MRI results.  His spine showed stability which is great.  Obviously we still have to watch out for any signs and symptoms of spinal cord compression but radiologically there has been no change.  We are still waiting for results regarding his hips and knees despite my weekly phone calls to the consultant's secretary.





















After this good news we boarded a plane and headed for some proper sunshine in Menorca.  We all had a fabulous time, swimming every day and visiting the beach.  Just generally chilling out and relaxing and enjoying time together as a family, in the sunshine!

As you may recall we have recently moved house and haven't got round to decorating anything yet.  On our arrival back home, from holiday my amazing friends had a massive surprise in store as they had redecorated Joshua's bedroom and turned it from the original purple and pink girls room into a proper boys dinosaur room!Our very own DIY SOS and 7 day makeover team!

Corey wasn't excluded from the makeover either and his room had some extra decorations in it but our plan is to redecorate it properly over the summer.

We're still here!

I know, it's been such a long time since I wrote to you all and caught you up on our news.  Truth is, we're plodding along getting on with life and all that it has to throw at us!

Facebook is a mainstay in updating the important stuff on a more regular basis but I have missed the cathartic feeling that writing on here gives me, especially at emotional times concerning MPS where I could say exactly what I was feeling about it and how it was affecting Corey.

When I started writing the caring bridge blog https://www.caringbridge.org/visit/coreyj it was because we were removed from our family and friends so it was like a conversation, albeit one way!  But it allowed me to tell you what was happening in our lives, on our journey and you could still be a part of it.
Nowadays we are living amongst our family and friends and see as many of you as we can on a regular basis so you are now enmeshed in our everyday lives leaving me with not much to write to you about!

I won't back date, I'll just start with the recent stuff as I fully intend (my mid year resolution) to write more often.  Heck, I've even joined a writing course run by the local carers register to help me get back on the writing wagon!

Quick back story, just in case you've forgotten who we are!  Corey is at mainstream school in year 3,
he is 7 years old and has a little brother, Joshua, who is 3.  They get along most of the time but know exactly how to wind each other up.  Teresa (me) and Shane have been together 20 years now and married for 7.  We have recently moved house to a bungalow - future proofed for Corey as he gets older his mobility may reduce significantly.  And it has a garden, something we have missed as a family and are very much looking forward to making the most of, if the summer ever turns up in the UK this year!

Last week Corey and I headed up to Bristol for his annual metabolic clinic check up.  We met with the metabolic team from Bristol and Manchester and I like this clinic because we talk to people who know more about MPS than I do, which is a refreshing change.  I had concerns about Corey's hands and feet because they always seem cold and even in the height of summer he wants to wear socks to bed.  This is an MPS thing, there can be poor circulation in the extremities.  I'm still learning new things.
Corey tires very easily and complains a lot about being tired but sometimes I wonder whether he's just being lazy or whether its because he just doesn't want to do what we want him to and it's just good to be reassured by medical professionals that his condition causes this and it's 'normal' for him and others with MPS.
To have a busy day means that the next day we will have to take it easy.  His body is not made right.  Not just that his body has a build up of crap in his cells that shouldn't be there but that his bones aren't made right and don't fit like they should, the fact that he is deaf and he has to try harder and use more effort all the time to do what we take for granted, being able to hear and join in conversations.  The effort it takes to repeat himself when he is not understood and I get this because when I have to repeat myself to people it tires me out!
It all factors in to why he gets tired and even as I live with him each and every day, I have to remind myself that things have to be different sometimes.  
We stayed over in Bristol as he had to have his annual MRI the following day and we had to check in at 730am.  I was hoping to take Corey to the science museum and planetarium but he 'was too tired' and wanted to play in the room at the hotel, so we read stories and did some colouring and learnt something about St George and played games until dinner time.

MRI prep via play dept
lego model of MRI scanner

Corey has become much more aware in recent years of the anaesthetic room.  He gets upset easily now when I tell him he has to have an MRI and that he'll need to have a sleep.  The past 2 MRI's he's been able to go in the room and see the machine and have a lie down before having anaesthetic as eventually he'll need to be awake for them and lie still for however long it takes.  He usually has head and spine which can take around 45 minutes, this time he was having hips and knees too and he was gone for just over 2 hours.

I have a tally somewhere of exactly how many anaesthetics Corey has had but we are in the mid twenties and I thought it would get easier but it gets worse.  Corey has to be the most forgiving child ever.  I held a mask to his face whilst 2 nurses held his hands and feet and watched his eyes close and when he woke up he still told me he loved me.  That's what gets me emotional, that I can't take this away from him and he has to go through it time after time.
That wasn't the worst of it this time around either, they forgot to take the heart rate monitor stickies off his chest before he woke up and I didn't think anything of him having a bath and soaking them off later that night but oh no, Corey had different ideas.  He thought they were inside him and spent an hour that night crying that they hurt but that we couldn't take them off because that would be worse, he wouldn't even let us see them as he was scared.  He slept in them and in the morning wanted a bath but still wouldn't let me try to take them off until I chucked baby oil all over his chest and they came off a lot easier!  It was so traumatic for him and something I will always ensure the doctors never forget to do again.
 
So, that's where we are today.

MPS Awareness day is upon us in 3 weeks and I'm hosting a coffee morning once again to raise funds and awareness.  I am also being sponsored to have my hair chopped off and the actual hair will be donated to The Little Princess Trust who make wigs for children going through cancer treatment.  I have also roped in 6 friends to have their locks chopped off too!

If you'd like to sponsor us you can here: https://mydonate.bt.com/fundraisers/mps2016

If you'd like to come along for coffee and cake, details are here: https://www.facebook.com/events/1727778400800660/

As always, thanks for stopping by,
Much love
Teresa