Leona Simon is the full time caregiver to her grandson Carl Cole. Carl currently attends Freedom Acres School, located southwest of Ionia Michigan, five days a week. Students attending school may interact with a variety of staff including Teachers, Health Care Aides, Speech Therapists, Occupational Therapists and Physical Therapists. Special education programs are operated in accordance with Michigan’s Revised Administrative Rules for Special Education. Leona provides transportation to and from school and usually stays around the Ionia area until dismissal at 2:15 to avoid an extra trip.
Carl was born on September 22nd 2010 at Ingham Medical Center after a normal length pregnancy. Carl was unable to continue independent cardiopulmonary functions within 12 hours of being born and was placed on an ECMO machine at U of M Mott Children’s Hospital. (“Extra Corporeal Membrane Oxygenation”, meaning heart-lung bypass). Carl had many complications arise during his treatment at the U of M Mott Children’s Hospital but was eventually discharged on December 6, 2010.
Carl has had multiple medical challenges in his short life. Although Carl has made great progress there are still existing conditions which require various medical professionals to be actively involved. Those conditions producing the most concern are Adrenal insufficiency, GK (Glycerol Kinase Deficiency) and DMD (Duchenne Muscular Dystrophy). In addition to these genetic disorders, Carl has a curved spine and only one fully functional lung and kidney. Carl is taking various medications, his weight is below average for his age, and he also has delayed development primarily due to his medical conditions. Despite having all the hardships to contend with Carl has an outgoing personality and a very positive, determined character.
Due to Carl’s medical conditions, he requires appointments with various medical professionals. These include periodic appointments to U of M Mott Children’s Hospital, Joel Greenburg, his pediatrician, and Sparrow Hospital to obtain blood test results. In addition to this, Carl has periodic physical and speech therapy appointments at Mary Free Bed Rehabilitation Hospital in Grand Rapids. Carl also participates in a program which allows Grand Valley State physical therapy students to become familiar with his medical history and spend time with him in therapy sessions, a mutually beneficial arrangement. Carl and Leona have also participated in the Sparrow Hospital Children's Miracle Network Telethon for the past two years and been interviewed as part of their broadcasts.
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