Porsha was born at 38 weeks of pregnancy along with her twin sister. Porsha weighed a healthy 6lbs 10oz she was born via csection. She wasn't upto upt temperature so had to go into the incubator for a few hours. She also couldn't latch onto the breast and bottle very good and when she did take some she would bring it back up with muccus. She would sleep all the time and wouldn't wake up for feeds. The hospital was happy to discharge us after 48hrs. Porsha would just not wake up for feeds so we would feed every 3hrs she would only take 30ml and then vomit back up. At 4 weeks diagnosed with reflux but still didn't work she started getting respiratory infections so was put on Antibiotics. It became a reaccurance. At her 6 week check up the Drs wasn't happy has she hasn't gained weight from birth and she was very floppy. Refered to peads within 2 weeks seen and admitted to ward for tests and diagnosed with hypotonia and failure to thrive. Put on high calorie milk to help gain weight.
With in a week she was admitted again with rsv she needed a ng tube to feed has she wouldn't feed. Porsha was in and out of hospital with failure to thrive and poor feeding. Poor suck and swallow. At 12 months old admitted to hospital needed ng tube and sent home then got a gastrostomy and fundoplication. Porsha is j tube fed now she's 6 years old and she has a diagnosis of PURA SYNDROME and KAT6B and she's also got p16P13.2duplication GRIN2A and SPD and hypotonia global development delay severe learning difficulties. She didn't walk until 2 but she is still clumsy. She prooved to them has we was told she's very poorly and floppy and won't do day to day things.
Porsha is unique.