The last week or so has been a real eye opener for me.
Not only was I lucky enough to get to attend a workshop/presentation about 24 hour postural care... but I also attended the Kidz To Adultz event at Event City in Manchester.
The whole thing kind of filled me with mixed emotions. My relationship with equipment now is somewhat different to how it used to be.
These days I actively seek out new ways to vary her positions and keep her secure.
It is almost exciting getting a new piece of equipment, especially when it has for example a good tray table or a really effective head support.
From the professionals involved in Amy's care I always seek out answers - they have seen children with movements like Amy's for decades, for me their expertise fills me with confidence and I aspire to make them proud in trying to do all of the exercises and therapy we need to do.
I remember when we first got a standing frame and I thought it was to help her learn to stand!
How far I have come since then - I know now that it is to keep bone density, strengthen muscles, and to maintain good posture (not to mention help with motility issues!)
Before last week I hadn't realised how important posture throughout the night is.
I know from experience that sleeping on my tummy gives me a bad neck and back.
However if Amy were to sleep that way she wouldn't be able to counteract it or think to move to a different position.
I learned about scoliosis and hip displacement - things I live in fear of with Amy.
Amy has a lot of dystonic (involuntary) movements and literally does not ever stop moving.
When she experiences a heightened emotion these movements are further exaggerated and can set of a pattern of movements she cannot control.
This can result in pain, frustration, feeling insecure and unstable.
It does upset me a lot sometimes that she isn't able to just relax and be still like we would; however we play the cards we are dealt and must pro-actively seek out ways to help lessen the possible negative effects.
So it has resulted in Amy being assessed for a sleep system.
It is basically a big sheet on the bed and you slide in foam wedges to ensure her back and legs are straight.
There is also this contraption that looks a bit like medieval stocks that holds her legs straight.
I am told to absolutely not expect this to be tolerated but that if we even managed one hour per night of her in this good posture then it is better than no hours and that hopefully we can build up the time spent in the system.
We also got told this month that we have an orthotics referral. Amy's hips are slightly asymmetrical now as she mainly rolls onto the same side and this is actually making one rib go in a little.
So we get to join in the other special needs parents in the battle to find nice shoes that fit well with splints!
We are also getting some gators to help Amy's knees not buckle when we do our bench standing at home and are also increasing her time spent in her standing frame.
The standing frame is a hated item in our household and even getting five minutes in it can be a battle!
One of our specialists said to me the other day, "You have so much equipment and so much you have to do that you don't actually realise how much you have learned and how far you come".
She was referring to the transition into the standing frame, or the assembling of the wheelchair and so on.
To onlookers it looks so impressive in some ways, but to us it is just normality and with each new exercise or piece of equipment we must know why we are doing this, and how to do it most effectively.
The event we went to was incredible.
I saw how technology is working hard to make our lives easier.
I loved seeing the new Firefly Splashy and absolutely cannot wait to order one.
Not only will it be amazing in the bath, we can use it in the paddling pool in summer too!
I also loved the switch powered wheelchairs, the bath lifts and so much.
We bought a wheelchair blanket that is fleecy and waterproof... I am so excited to use it as I have been really struggling to fit a cosy toes to her wheelchair and she kicks blankets off.
So this is perfect.
The only missing part of the puzzle for us now is a house that can fit in everything we need.
We are yet to get hoists and bath lifts and so on as our house isn't adaptable.
I can't wait to hopefully live in a bungalow one day and be able to save our backs and Amy's hips and spine!
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