Phoenix was born by a gentle section at 38 weeks. He was born with sepsis and was in neonatal for 5 days and on a week of iv antibiotics. We always knew there was something not right, he was a poor feeder,not meeting milestones,having allergic reactions daily.
At 10 months we were admitted to hospital for assessments, and ng tube fitting. This is where it all started with medical interventions. He has had to date 10 generals, muscle biopsy, lots of investigations, numerous refitting of his ng tube, his poor little face would break down daily due to his allergies. He then had a Gastrostomy at 16 months which has had its fair share of problems. Nothing ever was simple for him. Despite all this he is such a happy,smiley funny boy who loves his dinos, numbers and his ipad!
He is now nearly 5 years old and since November 2021 he is now nil by mouth due to getting covid and was unwell for about a month which has resulted in him refusing to eat or drink orally now.
He has this last month started licking crisps and will have about 50ml orally of thickened water. This is on a good day. Before November he had around 4 safe foods due to his ARFID but he won't touch these now which has resulted into 16 hour pump feeds. But he just gets on with it, enjoying school and being the beautiful boy he is.
This is just a little bit of what he has been through. Life can be difficult but we are blessed he is who he is.