Written by Jaxon's Mom Roni.
Jaxon was born at 33 weeks and we got his 1p36 diagnosis while he spent his 27 days in the NICU we were fortunate enough to find the support group immediately.
He left the NICU without any feeding tube or oxygen but that all changed over the next few months. Within 2 weeks of being home Jaxon had his 1st seizure. He's been on at least 11 different medicines in 6 years and currently on 5 including a clinical trial which reduced the seizures by 80% in just 4 months !! Many surgeries and hospital stays including one 3+ month stay for a pancreatic psuedocyst and pancreatitis. That also led to monthly labs at discharge for almost 2 years!
He has had his feeding tube since he was 8 months old and never quite learned how to suck /chew and swallow at same time so looks like it may be a permanent fixture..
He does not walk talk sit or crawl but does how a few versions of mom and no he says. He does not play with toys or watch tv but he loves the wind in his face he love the beach and the listening to music. He also found his laugh in the last year and his smile is contagious