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Trexler was born on a Saturday morning, October 30, 2010 on our birthday, weighing 6 Ibs 5 ozs and 4 weeks premature. Immediately there were problems with subnormal body temperature and poor feeding. Six days later he became very lethargic and was medevacked to MUSC in Charleston,SC. There he was treated for blood in his stool, failure to thrive and connective tissue disorder. After results of a biopsy, Trexler was diagnosed with Walt Disney dwarfism. He was in NICU for 3 weeks and came home on Monday before Thanksgiving.

He seem to be doing very well until 2 days after Christmas when he had a grand mal seizure and stroke and was transferred from a local hospital by ambulance to Palmetto Richland Childrens Hospital in Columbia, SC. Doctors put him on baby aspirin, keppra phenobarbital and prevacid and we brought him home after 2 weeks.

In February 2011, less than four weeks being home, Trexler was hospitalized for dehydration and started throwing up blood. Again he was transferred to the Children’s Hospital in Columbia, SC where he underwent GI surgery. He was very sick, having seizures everyday and almost died. Then on March 14th he had surgery for a G-tube. One week later we came home after a long six week stay.

We were home one week when Trexler began having hard seizures again and he was back in the hospital for another week. We brought him home still having seizures and crying for hours at the time. He was never able to hold his head up, sit up, tum over or coo. Later we found out that he was also blind. The doctor visit were several times a month and he required a full time nurse.

On March 5,2012, Trexler was hospitalized for pnuemonia and respiratory distress. Again he was med evaced to MUSC where he was in PICU on a ventilator for eleven days, with only a 20 percent chance to survive. After the ventilator was removed he was moved to the childrens floor for three days before we came home on March 19,2012. It was during this time that he was diagnosed with Menkes disease.

On WednesdaY,ApriI18, 2012 at 5:30 am Trexler passed away in his sleep at home with his great grandparents that took care of him. He was a very special baby and has forever changed our lives. Our precious baby is not suffering anymore. He has earned his angel wings. We will always love and miss him.

Frank and Katherine Mitchell



 

Posted: May 2013

 
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