In April 2012, Adam’s oft-postponed hip surgery finally went ahead at the Royal Children’s Hospital in Bristol. His right hip, which had been dislocated in an accident at school back in January 2010, was repositioned back into its socket in an operation that lasted for around four hours. Adam was then fitted with a Spica cast, a plaster cast from his chest to his ankles designed to keep the hip in position through the healing process, similar to the one he had after his original hip surgery in 2007.
Adam had to wear the Spica cast for eight weeks. During this time, the local Health Service arranged for carers to help the family out with overnight and daytime care. We also had use of a Chunc Spica chair), a pushchair specially designed to accommodate children in Spica casts (see picture below).
To keep Adam’s legs in the optimum position for the hip to heal effectively, the spica included a wooden bar between the knees. This made dressing Adam very difficult. However, thanks to some nifty tailoring by Adam’s maternal grandad, Richard George, Adam was soon outfitted with a number of pairs of trousers that had Velcro up each inside leg. This allowed them to be fitted around the cast, as can be seen in the picture below.
The Spica was removed in June 2012 in Bristol and X-rays confirmed that the hip had healed in place. However Adam was sore for several weeks after the operation.
The original intention was for Adam’s Spica cast to include his feet, to continue the Ponsetti treatment of Adam’s Talipes being undertaken by Naomi Davies at Manchester Children’s Hospital. Unfortunately, this was not possible and by the time the Spica had been removed, Adam’s feet had regressed significantly. It was therefore decided that Adam would have an intense course of foot casting, which necessitated six trips in five weeks from his home in Cornwall to the hospital in Manchester.
The course took place during August and early September 2012. The constant travelling and strain left Adam and his family exhausted, but the course was successful in reshaping Adam’s feet. He now wears splints 24 hours a day to try to keep the feet correctly positioned.
Finding standard shoes to go over the splints has been a challenge as his feet are very tiny but the splints have a large built-up heel and a high front. So far the best we have found are soft shoes with zips near the back that we leave undone.
On a happier note, Adam was delighted recently to receive a quilt from Love Quilts UK, a charity that provides beautifully decorated quilts for children with life-threatening or life-long illnesses.
Adam’s quilt features some of his favourite Disney characters including Pluto, Donald Duck, Woody from Toy Story, Minnie Mouse, Peter Pan and of course Mickey Mouse.
Each square of the quilt was created by hand by one of Love Quilts’ world-wide band of volunteer stitchers. Each square is a work of art in its own right and the full quilt is quite magnificent. Adam adores it and loves to wrap himself up in it or hide underneath it, at any time of the day or night.
For a closer look at the quilt, including details of each individual square, click here to visit Adam’s page on the Love Quilts website.
Because of his anticipated hip surgery (which then did not take place), Adam did not attend the Brainwave Clinic in Bridgwater during 2011, but he has now attended two sessions this year. The progress he has made has been encouraging.
The Brainwave therapy programme draws on the theory of neuroplasticity, which is that the brain’s neural pathways can be changed to assist children with physical or mental conditions. Brainwave’s therapists devise individual daily exercise programmes for each child, which is reviewed every four to six months. We would enthusiastically recommend Brainwave to any parents of a disabled child. Visit the Brainwave website for details of what the charity can offer.
Adam finally has a sleep system for use with his Centrobed. The system comprises tough plastic supports, fitted between specialist mesh, which keep him in a straight position while he is asleep and can help de-rotate the spine.
Adam has scoliosis. His spine is curving and rotating. The sleep system was working very well before his hip surgery and led to some improvement in his sleeping pattern and some visual improvement in his chest. It gave us a little hope that we could hold back the need for spinal surgery, but sadly Adam’s scoliosis progressed rapidly after his hip injury due to no longer having a stable base when seated. During the 8 weeks in a Spica cast it was very difficult to seat him well and for a lengthy period afterwards he was not able to use his sleep system due to pain or wear his supportive Lycra suit as he had outgrown it. Although he is now able to use the sleep system again, spinal surgery has not been ruled out.
Earlier this Autumn, Adam joined his local Beaver Scout Group and enthusiastically joins in at the Group meetings on Thursday evenings.
All of the Beaver Leaders have been most supportive and accommodating in ensuring Adam participates in meetings and activities to the full and we would like to thank them all for their kindness and consideration.
For a number of reasons, including the accident in 2010 which resulted in his hip injury and subsequent surgery as detailed above, Adam has now been withdrawn from mainstream school and is currently being educated at home.
While it is not our long-term goal for him, Home Schooling seems to suit Adam and he is making excellent progress in a number of areas, including letter recognition and practical lessons such as cookery, which he loves. His speech and understanding have improved markedly, as has his confidence. Eating and weight gain have been issues for a long while but he is eating well and has gained weight for the first time in a very long while. He is currently looking the healthiest he has looked and seems more able to fight off infections, although the winter months are always challenging.