Family Magazine

The Back Issue

By Mmostynthomas @MostynThomasJou
People have been asking how my back is.
I have never had back problems. But at nearly two years old, Isobel's increasing legginess is making physical carriage ungainly. Despite the dedicated efforts of her physiotherapist and PACE, her motor co-ordination is slow to correlate with her growth spurts, ensuring a persistently low-tone trunk that makes her slump more when carried.
If you've ever returned to a gym after a long hiatus, from the resulting aches you'll know that you've just exercised certain muscles within each group that were previously disused. CP is a little like that; its tightening grip on the brain's motor region ensures that certain muscles do not grow quite in line with the rest - which  partly explains the increasing contortion of individual body parts as the child matures.
Isobel is not even standing or crawling - never mind walking - although she often corrects her poise when sitting up with support. I am having to invent new ways of balancing her on my hip at the expense of my back (hence the expressed concerns). I have begun asking around about free Manual Handling Training for parents of disabled children.
That I should be writing about my back is especially timely given that my bump, at nearly 18 weeks, is more pronounced than it was when I was expecting Isobel. Although I'd known that I was pregnant for some time - ah, the wonders of Clearblue! - I was surprised to learn from the dating scan two weeks ago how advanced I was. I'd had an early miscarriage last January, so didn't think I would conceive again so quickly afterwards (ten days later, to be exact).
Before the scan, I was terrified that I might end up with another disabled baby. CP is not hereditary, but I have been emotionally scarred by my last experience with the hospital. Had they looked after me properly, I am convinced Isobel's disability could have been avoided.
I have booked my GP for a discussion about childbirth options, but although my files have been transferred to
another hospital, given my history (1.5 hours labour) and my rural location, I fear that I may end up in the same maternity ward as before. The new hospital is a hour's drive away and my midwife does not recommend a home birth.
Back to Isobel. As the bump grows, I will become less and less able to continue with her daily exercises outside of PACE. Barnardo's is kindly organising for a volunteer to come in for a few hours every week to work with her. My health visitor is re-referring me to my social worker, so I may organize respite care. Apparently a few nurses are attached to these services locally - which is frankly a godsend, knowing how complex Isobel's medication routine is.
Isobel's back is also at risk. Last week she saw an orthopaedist, who noted - to my relief - that her spine was still straight, her legs and hips flexible and not twisted. Nevertheless, she has been booked in for a monitoring review in 12 months' time. For so long as she continues to grow and develop, we cannot ignore the possibility of scoliosis.
Meanwhile PACE has loaned Isobel a teal neoprene vest with velcro straps and sides to wear during activities for 20-30 minutes every day. It resembles a sort of contemporary fencing vest, and works wonders on her sitting. PACE plan to put her in a more comprehensive nude-toned undergarment (like a bodyshaper) covering the tops of her arms and legs for future exercises, but being sensitive to NHS bureaucracy, they have to speak to Isobel's physio first.
With her jeans and top on and the undergarment inside, you wouldn't know Isobel had truncal hypotonia. PACE's Heather Last showed me a photo of one boy that I'd met when Isobel was having holiday sessions at the rehabilitation centre, and I was impressed. All that time, while I was thinking how poised he was, he was wearing that undergarment. Little did I know.
When not in the Triton chair, the Squiggles mat, the monkey stander or the pushchair, Isobel spends a lot of time on her back. She's become adept at inching towards the television, or turning the playmat into a 180 degrees whirl. Her disability hasn't stopped her from being a right little explorer.
Unfortunately, her curiosity has also built up a verifiable bird's nest perching just beyond the crown. For a long while, the whole of Isobel's hair was in danger of getting wrapped up in it. I was using anti-tangle spray every day, trying to minimise the mess by sweeping her hair into bunches or plaits.
In the end I'd had enough, and went for the snip. Yes, I cut it myself; a sweet little Christopher Robin bob that still draws gasps of admiration today - and no, I won't be setting up in business. It was hard enough cutting my own daughter's hair when she wouldn't stop looking at the scissors. 

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