When Joshua was 4 days old, the consultant starkly told me that he had devastating brain damage and as a result, he might not see, hear, talk or walk. I have covered the other skills in the last three days, so finally, let’s explore Joshua’s walking: Joshua was a large one year old and he was not inclined to move much, even though he enjoyed bouncing , all the time, when we held his hands so we knew he had strong legs and knees. We had a physiotherapist come to the house, to work on his right-sided weakness and she suggested that he had a splint, to support his right leg and to encourage him to walk. We agreed and he got a tiny plastic splint – like the back half of a wellington boot ; it was royal blue with colourful planets on it. This now made his right foot much bigger than his left and so we went to Clarks’ shoe shop and accessed their odd shoe scheme, where we could buy two different sized trainers, for less than two pairs of shoes. This splint gave Joshua the support and confidence that he needed and at around 18 months old, Joshua began to walk, which seemed miraculous at the time.
Once he was walking, there was no stopping him, he was fast and he was confident. I can remember walking up our lane with him and my mother in law and she was anxious that he might fall and wanted to hold him back, for his own safety. But I was thrilled by his mobility and if he fell, which he rarely did to be honest, he would just pick himself up again. The faster little Joshua walked, the tighter his right arm would get, until his hand was tucked up into his armpit with the effort and concentration. We saw that if he did fall over, he could not, or did not, reach his right arm out to save himself.
The splint definitely got him up and mobile and then he had several years without one, when he just wore sturdy shoes. But the physio kept a close eye on him and when he was at his first special school, so he would be around 8 years old, she recommended another splint – or AFO as the experts call them – as his foot position was becoming contorted and needed some help to straighten it out. I was not phased by the suggestion as I knew how his first splint had saved him and so he was cast for a new splint, with the same blue planet pattern for old times’ sake. Now that he was bigger and it was having to work harder to pull his right foot straight, he had more issues with it rubbing and hurting him at first. I do not even remember the timeline now, but he moved into two splints and he had botox in his legs to encourage the tight muscles to relax and be trained into the correct foot position.
The botox and physiotherapy had limited impact and his orthopedic surgeon suggested that only surgery would now help his contorted, twisted right foot position. We had an appointment to discuss this corrective surgery, when he was about 12 years old, but as my husband correctly pointed out, how could we explain to him that he could not weight-bear for so many weeks after the procedure and how could we take care of him post-surgery. At the same time, Great Ormond Street hospital were talking to us about brain surgery for better seizure control and, unable to handle both procedures, in 2014 we prioritised his seizure control over his mobility. We were warned that one side-effect of the hemispherectomy was tightening of Joshua’s right limbs, but we decided that he had no fine motor skills in his right hand anyway, so there was nothing much to lose there, and we went ahead.
Post surgery, Joshua struggled to walk and the surgeon reassured us that it would come back, with physiotherapy input and he expected him to walk out of GOSH, the same way that he walked in. However sadly that was not the case, and when we were discharged, he could still barely walk, we had to have an emergency OT visit to organise equipment for home and we moved his bed downstairs and my husband fashioned a bath on wheels that we filled with a hosepipe, so that he still enjoyed baths, but in the hall now! With physio and persistence, Joshua mastered the stairs again in over a year of sleeping downstairs. He was fitted for new splints and this time, in big, clumpy NHS boots with a raise, which compensated for the evident difference in his leg length , so they tried to even him out.
Last year, encouraged by the physiotherapist, we had an appointment with the orthopedic surgeon again, to see 5 years later on, how surgery could give him comfort and better posture with his right foot. We were bluntly told that there is nothing that can be done for Joshua as he still could not tolerate the non -weight bearing after the surgery and should he walk on his foot too soon, he could do irreparable damage and be confined to a wheelchair for the rest of his life.
So we are where we are now : trying to get callipers that fit him, without rubbing his feet, as he has outgrown splints. Joshua is incredibly fast on a flat surface, particularly if he is running away from you, down a school corridor or a supermarket aisle for instance. We take the wheelchair when we are out and about as he does not have much stamina since his brain surgery and in case he should have a seizure, but lately he has taken to pushing his own wheelchair and walking, until he is too tired and has to sit down. Joshua is mobile but his gait is awkward and lopsided, but he gets around, so in that way, he has defied that initial diagnosis when he was 4 days old and his determination, makes me proud everyday.