Since we have been discharged from hospital, we have adapted to home life with William as best as we can, and dedicated the living room of our 2 bedroom bungalow to William and his equipment. This has served us well and we feel extremely grateful to have our family all under the same roof. When we think to the future however, we know that we will face real difficulties accommodating William as he continues to grow and get heavier. Our home routine only really works because right now we can pick him up and carry him around the house.
We are able to bathe William in the shower cubicle in our bathroom, but we are worried about how long we can continue to do this. The project includes for a wheelchair accessible wetroom which we could use to bathe William using a specialist bathing seat.
Because the only room we had which was big enough to fit William’s bed and equipment was the living room, we gave up this room to facilitate him and get him out of hospital. This means that the only place we can relax together as a family is in William’s bedroom, and it means that William rarely leaves this room when at home. The adaptations would allow for a dedicated bedroom for William with a ceiling mounted hoist. His bedroom would adjoin the main living area so that he can be wheeled out of his room and be included in all aspects of family life.
In addition to the above works, the proposed project would allow for access ramps to the front and back of the house, as well as wheelchair friendly access into and all around the rooms William needs to use. Currently, getting his wheelchair and other equipment in and around the house is tight in most areas and impossible in others.
We have been awarded a disabled facilities grant (DFG) to help with adapting our home to better meet William’s needs, but the figure doesn’t cover half of our cheapest builders’ quote.
We are grateful for any help which gets us closer to being able to accommodate William into his family home and allow us as parents to celebrate his continued development without worrying about how we are going to look after him as he grows.
William was born with an undiagnosed neuromuscular condition which has left him with a long list of life limiting complications and developmental delays. He doesn’t walk or talk, and can stop breathing with very little warning requiring resuscitation. Because of this he must always be accompanied by 2 people trained in paediatric life support.
William spent the first 2 and a half years of his life in hospital before starting a phased discharge home. He has come so far from his first year, when life threatening episodes were a daily occurance, he was invasively ventilated, we could get no emotion from him whatsoever and his outlook was dire. He now recognises familiar faces, smiles, laughs end enjoys life. He is 4 years old now and has been at home full time for just over a year with his older brother Jamie, Mum, and Dad. Despite his many problems, you could not wish to meet a more pleasant and happy child than William!
All of his feeds and daily medicines are given via a gastrostomy because he has an unsafe swallow meaning that food has a good chance of ending up in his lungs if eaten normally. He sleeps with a non-invasive ventilator because he is most at risk from his particularly dangerous brand of apnoeas when asleep. He is also permanently connected to a SATS machine to monitor his oxygen levels.
Most of William’s progress is being made in his movement and physiotherapy sessions. He can comfortably sit up unaided for long periods of time and is tolerating bearing his own weight in a standing frame. He cannot yet crawl or otherwise move about a room but we are hopeful that one day he may be able to stand and take a few steps.
We have recently secured a place in a local special needs school and we are optimistic about the progress he could make there. Everything is in place for starting in the new year and William is ready for the challenge. 😀