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.
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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
