Latest blog Appointment anxiety is ready to be read online here https://www.fireflyfriends.com/uk/blog/appointment-anxiety/
Half-term is upon us – not entirely sure how that came round so quickly but here we are.
As is always the case with the Dude, he has taken all the changes that the last couple of months have brought in his stride.
I do want to know however who is the monster who thinks it is acceptable to schedule in multiple hospital/clinic appointments and/or reviews in the space of two weeks just as he is getting settled into a new school routine?!
Seriously people, the entire summer passed with barely a whisper from the appointments office and yet as soon as term began…
One of the appointments I dread more than any other are his spinal reviews.
The Dude developed scoliosis, at 4 years old. Like so many children with his neuromuscular issues, the weight of the head is just too much for the muscles of the spine to support so the spine gradually curves over to the side.
We know surgery is the only way to ensure that the spine is stabilised and prevented from curving to the point that it crushes his heart and lungs, but that is not something anyone wants for their child.
This time, we’re seeing his surgeon.
Thanks to covid-19 it’s been A While since we’ve seen him, and he is concerned that the chaps spine may be reaching a level of curvature where difficult decisions around surgery can’t be postponed.
It’s the appointment I have feared for almost 7 years. I spent much of the afternoon sitting in the waiting room while the Dude and his Dad are down in x-ray, trying to hold it together.
I have no idea why scoliosis terrifies me so much – after all, we have lived with uncontrollable, life-threatening epilepsy since he was a matter of weeks old, and yet there is something so insidious about the way a curved spine will slowly continue to worsen, gradually causing my child increasing pain and disability, that eats away at me.
And is so often the case with these amazing little people, the appointment went better than we could ever have imagined – a combination of excellent postural support from his wheelchair, a superb sleep system than he actually LIKES (I kid ye not), and a dynamic orthotic suit that supports his spine means that his scoliosis is relatively stable… surgery can wait for a bit longer.
Fingers crossed we can keep him well enough that surgery can wait until growth rods are no longer required and he can have a single surgery to fuse his spine and sort this scoliosis once and f
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