Sure enough, 6 months later we sat in front of Mr Davies and despite him being pleased with Charlie’s muscles and passive (relaxed) flexibility he was a little concerned with his dynamic (active) ability.
If you were to move Charlie’s legs with slow, relaxed movements you would find them reasonably similar to anyone’s- until the more extreme range. This is passive stretching. When Charlie tries to move fast or is moved fast his muscle contracts in a braking-like action, increasing his muscle tone- these are called Tardieu catches. This dynamic movement is where Charlie struggles as his brain is unable to balance the signals between the pairs of muscles in the leg, e.g. the thigh vs. the hamstring, meaning one contracts too much- in Charlie’s case; the extensor- the hamstring. Unfortunately it is dynamic movement that is required for walking.
So, Botox injections were arranged in the Feb of 2014 at Sheffield Children’s Hospital. We attended a rather large waiting area where many children waited for an anaesthetic pre-assessment and a quick word with one of the surgeons to re-explain the procedure. There were many children waiting for many different ops and there was plenty to do- games consoles, craft tables, books and more. After Charlie was given a quick once over by a very pleasant Anaesthetist he was given a little gown to wear with cars and trucks on. He was fine, as were most of the children in that waiting area- not so sure the same could be said for the adults! Lots of worried looking pale faces…
When it was time to go down to Theatre I took Charlie down for his Anaesthetic (bearing in mind Lou found it difficult previously) and he was given gas to go out. He was fine- so fine he fell asleep with a Lightening McQueen comic still in his hands.
We were given a vibrating remote and allowed to head off- we wandered down to the canteen for a coffee. Honestly, it was there when once again I was reminded how lucky we are- in a large centre of excellence like Sheffield it was obvious to see the number of children that would have given anything to be in Charlie’s shoes. My heart goes out to those families- we have found things emotionally tough but I can not imagine the heartbreak to have a child with a terminal condition or a seriously life-limiting condition.
After seemingly minutes for me, days for Lou (actually about 2 hours) the buzzer vibrated and we rushed off to the recovery suite. We found our little man comfortably dosing in a trolley bed. The relief was palpable when he woke- he wasn’t grumpy or upset, he smiled and so did we!
After a short while in recovery we were moved back up to a waiting ward- with Charlie awake and well it was a matter of time before he was able to leave. All we had to do was get some food down him… typically Charlie had other ideas. While we waited Charlie opened a number of gifts- one was quickly a favourite, a Pudsey T Shirt (Thank you Susan and Graeme!).
Botox injections are meant to be quite painful, Charlie had 12 in his left leg, 14 in his right, in various positioning in his hamstrings, abductors and calf. He had tiny corn plasters dotted up his legs- much to his amusement. He bore his ‘wounds’ without so much of a whimper, much to add to the pride of his parents.