William is our 3rd child, he was born at 36 weeks and we received a post-natal diagnosis of Down Syndrome. He spent 2 weeks in Special Care and left with a feeding tube because he struggled with feeding. William was able to have his NG tube removed after 4 months, however feeding was still something that he struggled with.
William has a large medical team and he currently sees 13 different professionals. He has sleep apnoea, respiratory issues, poor mobility, SPD and ARFID which is an eating disorder. We spent all of Christmas and New Year in 2019 in hospital because he had severe pneumonia. This was hard for all the family especially having his 2 siblings at home and we weren't together enjoying the Christmas festivities.
William has always battled with food and this was made worse after his pneumonia. He only eats purees and tiny portions. After 10 months of gaining no weight his NG tube was re-fitted a year ago when he turned 3.
William is now waiting for urgent surgery to have a gastrostomy fitted as he finds the maintenance side of having a NG difficult to tolerate thanks to his Sensory Processing Disorder. He also has constant sinusitis due to his NG only being passed through the same one nostril. He is also waiting for surgery to correct a squint in his eye so the next few months will be challenging for him.
William is now 4 year old and he started SEN school in September and loves it. He loves people and charms everybody who is lucky to meet him. He brings so much love, joy and light to our family.