I would like to introduce you all to my son conor. conor is nearly 3 yrs old . born 2007. He is a very happy little boy and is always full of smiles .
when I was pregnant with conor everything was going well until i had my scan and it showed i had polyhydramneous ( excess fluid around the baby ). at this time i didn't know there was anything wrong . I went into labour 5 weeks early and conor weighed in at 7lb 10 oz. which was really big . doctors came to me that evening and told me they noticed conor had dysmorpic features and at first they thought it was down syndrome which they were obviously wrong!
conor had feeding problems from the time he was born, he had problems with sucking . 3 weeks later he was let home when he started to drink from bottles. conor had problems with his hips and had to wear a pelvic harness for a couple of months . this was rectified .conor was eventually diagnosed with PKS at 14 months old and it was a shock but a relief at the same time that we finally had a name for what he had. conor suffered a lot of chest infections for the first year and he had a videoflueroscopy which showed his milk was going into his lungs and it was this which was causing his problems. so he had a nasal tube inserted every 5 days . I was trained to insert this and it was hard but it had to be done. this went on for 6 to 8 months. conor now has PEG tube and since he had this inserted he has had only a few chest infections.
conor has glasses and has had his hearing tested , his hearing is only slightly affected. so he can hear us . conor is developmentally delayed but he is getting better as the weeks go by. he sits for 4 to 5 mins and is making more sounds vocally.
conor is a happy little boy and we love him to bits and wouldn't change him for the world!!!!!!
by Elaine Murphy, conor's mammy.