I could talk about Philip all day, but find it hard to write. Philip was born on the 10 August 1994 he was diagnosed at 20 wks gestation as having no brain. When born we were told all was well, his head was correct size, (I had a son who had microcephaly, so his head was small) and they thought if Philip had no brain his head would be large as it would be full of fluid. They said his movements, colour, etc was well and he could go to the ward with us. Because they were so certain during my scans, I insisted they scan him before we rang our family, so they took him for a scan and half an hour after his birth they told us to have him baptized immediately as he would not live very long, he only had a brain stem, and this could only sustain life for 2 days to 2 weeks maximum.
So I am very thankful that we celebrated his 18th birthday last August, Philip is a very happy boy, even though he has horrible seizures every day, and has bowel problems. He loves music, especially classical music and laughs when he hears the violin, he also laughs when I sing to him, but then again everyone laughs when I sing!!!!
He giggles when babies cry! So noise is important to him. He had a shunt fitted when he was 13 wks old, not because his head had started growing, but they said it would and it would be better for Philip if the shunt was placed while he was well. He loves the bath and some years ago Santa brought him a spa bath which he really loves and relaxes when he is in it. He follows us as we move around if we are reasonably close to him, and looks out for us when he hears our voice
Philip does not go to school, this is my choice as I worry about him picking up germs, so he spends his day at home with us. He loves toys that light up and make noise, and he enjoys watching optic fiber lights change colour.
Something that has just come to mind, things Philip loves most, his mum and dad, in that order (don’t tell Dad lol) and whispering in his ear, and Daddy whistling! Things Philip hates the most, getting his teeth cleaned, his face washed, his medicines, and sitting on his own bottom, in no particular order.