Having cerebral palsy in our lives has brought some frustrations and challenges for our little boy and for the family, some of which we certainly didn’t anticipate when we revived his diagnosis in 2016.
One of which is the difficulties his AFO (also knows as splint) has brought…and his obsession with only wearing one specific pair of (now very worn) white Tesco trainers!
He has to get his right foot and lower leg set in a temporary cast every few months which he HATES getting done. This cast creates the shape for the splint to be made into, which is sent off and arrives back 4 weeks later.
He needs this to support his ankle and foot which would otherwise collapse inwards on itself at the ankle at a right angle. This causes strain on his joints, tone, posture and muscles. I do daily physiotherapy stretches with him to try to compensate for this.
When he first started visiting orthotics to be cast when he was still tiny, we had to have a couple of staff help me hold him down while it was carried out. They wrapped the wet bandages around his leg with a tube fed down the front then minutes later once it had dried, a large pair of scissors cut down the front of the tube to remove the cast.
He would try to wriggle free and break his heart with fear every time…and still does. 😭
A necessary procedure but heart wrenching for me and traumatic for my little one, who doesn’t understand what is going on and why.
I would often return to the car park with him and cry on the drive home as I felt so guilty for putting him through it and sad for him at having to go through it. The poor wee soul just couldn’t understand what was happening.
Two months ago I discovered a 1p sized blister on the instep side of the sole of his foot.
My heart sank.
Either the splint wasn’t on properly and had been rubbing him or it wasn’t fitting him correctly any more.
The dread this filled me with was a weight dragging me down. I knew we would have to leave the splint off to let it heal, try and get an emergency appointment with orthotics and potentially have to get it re-cast if it wasn’t fitting correctly (hence the blister). The wee man was in pain every time he put his foot down.
I was already dreading the next few weeks as we have been through this before.
As soon as the splint it off for a couple of weeks, my 3yo gets the taste for freedom of what it feels like to not have a warm, sweaty, muckle plastic casing around your leg all day and he is adamant IT IS NOT GOING BACK ON!!!!!
So I could foresee the battle ahead.
So after a week and a half of waiting for an emergency appointment, four weeks waiting for the new splint to come back, a week and a half of the splint going AWOL sent to the wrong hospital, THERE IS NO WAY HE IS PUTTING IT ON.
We are utterly drained at the daily rigmarole of trying to appease, coerce and bribe him into wearing it as he sobs that he is “scared” because it will be sore and he angrily launches it across the room.
And the reality is, it might actually be sore, because he was so distraught when we went to collect it this week we couldn’t get him to try it on at the hospital so the trained orthotics professional couldn’t check it fitted properly.
We have also had to dispose of his beloved Tesco trainers which were falling apart and replace them with exactly the same pair (which look brand new), but they are not THE trainers he had before so he is majorly losing his shit every day about this.
So here we are, with shoes and a splint he is refusing to wear. And a little boy in nothing but socks being ferried around in a pram.
His tiny body is starting to show the effects of almost 2 months with no ankle and foot support, and the rest of the family are feeling drained with the daily shoe and splint battles, tears, shouting and tantrums.
Definitely something we did not anticipate when we had that diagnosis 2 and half years ago.
Mixtape Mum 