After a successful go at Botox, Charlie was able to bring his heels back down to the floor when stood against something. With regular stretching and massage we were able to further increase Charlie’s range of motion in his hip, knee and ankle. Unfortunately it wasn’t enough for him to spontaneously develop a walking pattern or reduce his muscle tone consistently or for long enough for him to develop his balance.
Even now (with Charlie being 3 ½) we spend most of our time developing tricks and games that encourage him to weight-bare and balance on his feet. He has reasonable strength in his legs- he can push you away with them but still he seems to ‘drop’ when he needs to push through them. We have tried wheeled sledges (Charlie’s ‘turtle shell’) to develop his pushing and pulling strength. We play balancing games on coloured spots of fabric on the floor, we stand up against chairs or even simply ‘take off’ (in Charlie’s words) from sitting to standing but balancing for more than 5 seconds independently or 10-15sec with his AFO orthotics on seems beyond us.
So when we were due for our next visit (Feb 2015) with Mr Davies we resolved that we ‘wanted something doing’. Whether that was referral to Leeds for SDR (Selective Dorsal Rhizoplasty) or more Botox we had decided we wouldn’t leave until something was put in place.
Well, we left with nothing. We left gutted- we weren’t having anything, no SDR (Charlie was not suitable; not strong enough or have enough balance), no muscle lengthening operation or even any Botox. We left dejected and downhearted- no magic cure.
What we failed to realise until the way home, after talking about the appointment, is that Mr Davies had been again effusive with his praise about us and Charlie’s progress. His muscle spasticity was better than after his Botox, even better than when he was under anaesthetic. He was going in the right direction! We had been so caught up in the idea of a miracle cure we had failed to spot how much Charlie was responding to our treatments and all the effort his therapists were putting in.
Mr Davies even showed us on himself that HE couldn’t stretch as much as Charlie! He described an SDR as a treatment for a select few patients- those with good strength and balance but terrible tone or those with like functional ability for comfort in a wheelchair. Charlie was simply not strong enough AT PRESENT and the potential risks would, in his opinion, outweigh the gain. I actually have maintained all along a similar sentiment and have read much on the subject- however, I had allowed myself to get swept along with Newspaper article and well-wishing family and friends perpetuating the idea of a surgical miracle clue.
He also suggested that Botox would not be so helpful right then as Charlie was maintaining his progress and that we should keep waiting until such time that contractures occurred or cramping or even until Charlie had a growth spurt. Charlie was doing all he could himself- which meant we were doing all we could to help him- we should have left ecstatic, but we didn’t.
It was about this time that Charlie’s Challenge was formed. We needed to push Charlie’s therapy in a way that we couldn’t afford- we needed a massive amount of stimulation, therapy and ideas. Not only that, we needed to become Charlie’s parents again, not his therapists- let someone else bear the brunt of his frustration and let us feel the love!!