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Anthony Durham - June 11, 2016

Anthony's journey began March 15th, 2012. He had a difficult labor and was born not breathing. Right away we noticed he would not latch to nurse and was having trouble maintaining his blood sugars and temps. By the next morning he was transferred to OSF NICU. Doctors were concerned that he was fighting an infection. Over the next few days he continued to get worse. Doctors thought Anthony had NEC, an infection in his intestines. They began treating very aggressively with powerful antibiotics. He slowly began to improve and we were able to bring him home at two weeks old. Anthony's journey did not end there.

To date he has been hospitalized 15 times in just two short years and has had countless medical procedures and tests. Anthony has had an umbilical and epigastric hernia (repaired May 23rd), congenital heart defects that have spontaneously closed, and GERD that we are still trying to control through medicine and diet. He also deals with hypotonia. Hypotonia means he does not have the right amount of tension or resistance to movement in his muscles making even simple movements harder for him. Hypotonia usually has an underlying cause or disorder. We are still searching for the answers as to why Anthony has hypotonia. As a result of his hypotonia Anthony also has a very hard time gaining weight and has been labeled failure to thrive. On December 20th, 2012 he had a gtube placed for supplemental feedings as well and an inguinal hernia repair. Most recently he was admitted to the hospital for aspirating and vomiting in February of 2014. He had a GJ surgically placed. This has alleviated most of the vomiting. He is fed via his intestines 22 hours a day. On January 18th, Anthony was diagnosed with PVL, known as periventricular leukomalacia. Anthony's white matter around his ventricals is dead due to oxygen loss. We are unsure of what caused this or what it means for his future. His neurologist said he is at high risk for cerebral palsy but only time will tell.

Anthony is currently diagnosed with: hyptonia, PVL brain injury, Failure to thrive, gj tube dependent, Nissen fundoplication, hypoglycemia, dysphagia, sensory processing disorder, strabismus, nystagmus, farsighted with astigmatism, severe obstructive sleep apnea, vsd heart defect, GERD, and epilepsy. He sees 15 specialists and is in PT, OT, Speech, and Feeding therapy!

Anthony is the happiest little boy you will ever meet and will light up your world. We promise to never give up hope and keep fighting for an answer.