Anthony D
Illinois
Birth Date - March 15, 2012
Main Diagnosis - Neurological disorder & intractable Epilepsy
THEME: Animal Babies
Anthony's Story
Anthony's journey began when he was born not breathing. He was having trouble maintaining his blood sugars and temps. 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. His 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 which means he does not have the right amount of tension or resistance to movement in his muscles. Hypotonia usually has an underlying cause or disorder. We are still searching for the answer to what that is. As a result of his Hypotonia Anthony also has a very hard time gaining weight and has been labeled failure to thrive. In December 2012 he had a gtube placed for supplemental feedings as well and an inguinal hernia repair. In February of 2014 he had a GJ surgically placed. He is fed via his intestines 22 hours a day.
Anthony has been diagnosed with PVL, known as periventricular leukomalacia. Anthony's white matter around his ventricles is dead due to oxygen loss. We are unsure what this means for his future. His neurologist said he is at high risk for cerebral palsy.
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.
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Thank you to the ladies at Love Quilts. Anthony loves his beautiful new quilt!
