Sam's quilt came today! Thank you so much, it's beautiful ❤️ Sam has very poor vision so his solemn face is actually him trying very hard to see what's going on. He's lying on it even as I type, playing with his favourite toy, but he keeps rubbing it with his hand, feeling the different textures. It's so lovely and bright, when he's in his chair I'll show him the squares. Thank you everyone, thank you so much ❤️❤️❤️
Sam was born at 33 weeks by emergency c-section. After 5 weeks in NICU he was sent home with a clean bill of health, but was difficult to feed and a community NICU nurse expressed concern over his eyesight.
At 4 months old he finally refused to feed at all, and was admitted for exploratory surgery. His previous diagnosis of colic was rapidly changed to silent reflux, which developed into full blown reflux. The NICU nurse continued to push for a neurologist to examine him and so he was diagnosed at 6 months with Cerebral Palsy, and labelled 'life-limited' and 'severe failure to thrive'.
A routine operation at 8 months old to examine his eyes led to 2 collapsed lungs and his first stay in PICU. His original diagnosis of an inoperable detached retina was added to by a later MRI which showed his visual cortex was damaged as well. A gastrostomy and fundoplication replaced the NG tube and then a few months and many hospital admissions later a tracheostomy followed.
Hospital admissions remained frequent, with Sam spending more time on the ward than at home, until a chance conversation with a friend led to the discovery of blended food.
Sam is now 6, and is a happy, lively little boy with an amazing zest for life. He has an R82 X-Panda wheelchair and house chair, and despite his compromised immune system, and being unable to walk, talk or even play independently, he loves the school he goes to although he is less fond of the hour in the car every morning to get there! His condition means he is still termed life limited, although it's hard to remember that when he smiles us, his smiles just melt hearts.