Jonathan (2016)

Jonathan (JonJon) Sherman was born a month premature on 10/29/08. It was clear from the beginning that there were going to be challenges ahead. Jonathan had a grade 1 intraventricular brain hemorrhage at birth and stopped breathing twice while in the NICU, so he was sent home on an apnea monitor for 3 months. At 10 weeks old, he had the first of many hospitalizations (and countless ER visits) for respiratory distress. JonJon has had a long list of diagnoses that include asthma, global hypotonia, Dyspraxia, Chiari 1 malformation, Marfan Syndrome, mild Hypotonic Cerebral Palsy, a large cyst on his brain, involuntary eye rolling, chronic constipation, reflux, mild obstructive sleep apnea, Periodic Limb Movement Disorder, iron deficiency anemia, ADHD, febrile seizures, scoliosis, bilateral pronation of his feet, Sensory Integration Disorder, and a slowly progressive neuromuscular disorder has not been ruled out.

One of the biggest struggles for us has been trying to piece together the puzzle that all of these different diagnoses formed. As JonJon has gotten older, he has proven time and again to be a trooper and has gotten through a seemingly endless list of appointments. Most recently he had a very large cyst in his brain which was increasing his intracranial pressure. On December 23, 2015 he was admitted to the PICU after doctors decided he may have been developing hydrocephalus and that very day they placed a probe directly on his brain to measure the pressure. On Christmas Eve, 2015 he had brain surgery to drain the cyst as they are unable to remove it. So far, the results of the surgery have been very positive and many of the symptoms he had been experiencing have started to resolve.

Despite this daunting list of diagnoses and issues JonJon is one of the happiest and friendliest kids you will ever meet. He does very well academically, loves to read and math is one of his favorite subjects. He has been through so much in his short life and handles it all with a positive attitude and a smile on his face. He is so charming and his spirit brightens the day of everyone he meets.

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