Our January post is an update on a previous story – written by Tristan’s dad Adrian.
Looking back over the last four years it’s been one hell of a ride. There have been some highs but also some lows that have had me on my knees in tears wondering how I’m gonna have the strength to actually provide care for Tristan. One thing throughout his life has been consistent and that is that Tristan just wont give up and give in. When Tristan was two he was diagnosed with dystonia (a movement disorder in which muscles contract involuntarily, causing repetitive or twisting movements). We finally had his infantile spasms and other seizures controlled and then got told he now had another huge battle dealing with a neurological movement disorder. One of his specialists even said that it was the worst case that they had ever seen in their 20 year career in someone so young. It was heartbreaking to see our little boy in so much pain but he somehow still managed to soldier through and smile. I have to admit at this point I’d hear people complain about relatively small things and at times I felt like giving them a good shake to wake up.
When Tristan was three he was on eighteen medications a day and sadly he lost his personality again. I say again because he had already been through the vigabatrin battle. He spent most of his time like a zombie or asleep with only rare glimpses of a smile. It was heartbreaking to watch our baby so doped on meds that he had no life. At this point they deemed him a choke risk and took away the one thing he enjoyed most – food. He had an NG tube fitted and was prescribed synthetic milk and no food by mouth, worse still we were told he probably would never feed orally again.
During lockdown, overnight all our services vanished. Tristan outgrew his specialist chairs for at home and going out and his standing frame. He spent most of his time lying on the floor because he couldn’t do anything else. The UKIST group became so important – it became the village we never knew we had and a comfort knowing that we were not alone and even though I’d posted lots of times before it had become so much more during this period.
Tristan is now nearly five and finally looks like things are coming together. After being told no food by mouth Tristan is now on everything fed orally, he is developing a love of chocolate especially giant chocolate buttons! Tristan is in full time education at a special school, we have seizure control and potentially freedom, his dystonia is in a better place and is now only on seven medications a day with no AED (anti epileptic drugs). He is bright, he sleeps through the night (mostly) and is awake all day without naps. He has become more vocal and although he not yet talking he certainly responds. He has the biggest smile that lights up a room and even though he does have off days they are further apart than they once were. Tristan is such a blessing, he is an inspiring warrior and even though he is well behind his peers by development standards he knows and has lived so much more.
Link to Tristan’s original warrior story