“He’s brought so much love and joy into our life.”
Parker Bonatz, Trisomy 13, 04/24/2014, Trenton, NJ
Update: Parker has been doing extremely well. He’s just about off the ventilator during the day. He has been able to come off a few of his medications. On February 1 2016 he had a lip adhesion surgery, ear tubes placed. He’s healing well from both and in May 11 2016 he will have a complete cleft lip surgery and nose reconstruction. He’s getting stronger, holding his head up better, working on being in the crawling position but not yet crawling. He got his first Braille books and we enjoy reading them. He’s also become more alert and aware of his surroundings and new people since his ear tube placement.
Additional text: Parker was born with extreme cutis aplasia (now closed) micropthamalia (conformers placed) bilateral cleft lip bilateral cleft palate bilateral hydronephrosis hypotonia low gut motility tetralogy of fallot. Parker had a trach and g tube placed at 4 weeks of age. The trach has been a tremendous help. The g tube failed healing and his stomach prolapsed out it took two major surgeries to close. He is now fed via an NJ tube. He will soon be having tubes placed in his ears, evaluated for cleft lip repair, retainer fitting. Possible swallow study done, repeat hearing test after tube placement.
Original text: Parker was born at 37 weeks and was diagnosed at 4 days old with full trisomy 13 (one of the rarest the genetics dr has seen) he was given a week at most to live. He was born with micropthamalia, bilateral cleft lip/palate, extreme cutis aplasia (exposing his brain) bilateral hydronephrosis, he has a trach, he’s on a vent, he has a nephrostomy tube, Nj feeding tube. He’s on 14 medications daily. He has come such a long way! He’s brought so much love and joy into our life. He’s now 17 months old.