Sam was born seemingly normal after a trouble free pregnancy. At 10 days old he started making small 'twitchy' movements which escalated very quickly over the day and led to hospitalisation. After a two week stay he was diagnosed with Tuberous Sclerosis. The seizures continued on a daily basis despite medication, but were very short and didn't seem to bother Sam too much. He'd simply carry on as before after each one. His development was delayed, it took him a long time to learn to sit unaided, he never crawled etc so was enrolled in physio sessions.
At 16 months old we awoke one Sunday morning to find him blue. After arriving at the hospital doctors gave him every treatment they could think of to stop the seizures but he continued for another 14 hours. He was eventually put into an induced coma and put on life support in PICU at Bristol Children's Hospital.
By Wednesday the doctors broke it to us that they could do no more and we had to make the decision to turn off the life support. We had an emergency Christening and all the family came to say their goodbyes. But my little man had decided it wasn't his time. He fought back and managed to convince the doctors to give him another chance.
When Sam woke up he was just like a new born baby. He couldn't do anything. He'd lost his suck and swallow, was paralysed down his right hand side and couldn't hold his head up. The doctors didn't hold out much hope and basically told us he wouldn't really improve. But he's a fighter. After 6 months as an inpatient he was finally allowed home. He had an NG tube for feeding which he frequently managed to pull out, but he gained weight despite awful reflux, and eventually was given a gastrostomy which made life much easier!
Sam is now 14 and has, over the years, learnt to do many things we never dreamt he would. He still has no purposeful movement of his arms or legs and can not sit up or support himself but he loves to lie on the floor and is very skilled at rolling over and getting stuck on his stomach! His head control is generally excellent and although he isn't able to communicate his needs, his facial expressions say it all! He has also learnt to eat again and manages purÃ©ed or mashed foods and soft things (cake, especially chocolate funnily enough, is a favourite!) All medication and fluids are still given through his gastrostomy as well as top up feeds as he doesn't eat enough to maintain a healthy weight.
Sam still has his ups and downs and winter is always a tough time for him. He is prone to colds and chest infections and has been admitted to PICU a further 3 times due to these. His seizures are still a daily problem and as he's got older, they have intensified in length and strength. He now usually needs a sleep after a seizure as they are much more draining for him.