MayRoseLilli
Ongoing Hospitalizations and Doctors Appointments
MayRose was born three months premature at Sunrise Childrens Hospital NICU on May 14, 2008. She remained there until she was discharged as being a "healthy baby" on August 2, 2008. During her first three months at home, she began tracking and had an MRI that showed her brain to be normal. On October 29, 2008, she went into anemic shock and was rushed to the Summerlin ICU around the corner from her house. During her stay at the Summerlin ICU, it ws determined that she had suffered diffuse brain damage from the anemic shock. As a result, MayRose was admitted to Denver Childrens Hospital Pediatric Rehabilitation unit where she was seen by a Physiatrist (rehabilitation medicine doctor) and several rehabiliation specialists.
As a result of MayRose's various challenges during the year of her birth, she has since been hospitalized eight times in 2009, including in January, twice in February, March, May, July, August and September. She also was hospitalized in January 2010. Most recently, she was hospitalized in April and again in May 2011. Most of her hospitalizations were due to her contracting a virus which raised her body temperature and lowered her white blood count. She remains in the hospital, on average, for five days at a time until her white blood count increases and her temperature returns to normal. During April and May of 2011, she was hospitalized for six weeks and received two weeks of outpatient care at Los Angeles Childrens Hospital while staying in the Ronald McDonald House. MayRose is on numerous medications.
MayRose's pediatric brain injury caused developmental delays, cortical visual impairment, and makes her prone to having seizures. In addition to receiving rehabilitative therapy four times a week, MayRose has multiple doctors appointments a month. She is seen regularly by multiple care-providers, including a Pediatrician, Hematologists (DBA), Gastreoenterlogists (reflux), a Physiatrist (rehabilitation), a Neurologist (brain injury), an Orthopediologist and Endocrinologist (bone development), and Opthomologists (visual impairments). She also is followed by an orthotic specialist who fitted her for leg braces prescribed by her physiatrist. Her caregivers are strong supports of the Sarah Jane Brain Foundation.
As a result of MayRose's Diamond Blackfan Anemia, she must receive blood transfusion at Los Angeles Children's Hospital once every three weeks for the rest of her life. She has a device called a Port that is located under her skin which is accessed in order to provide the transfusions. She also has a G-tube in her stomach to help her receive the appropriate amount of nutrients because her brain damage has affected her ability to swallow foods and liquids. Although she loves to eat, it takes her longer than most children, thereby requiring a baseline amount of formula to be provided through the G-tube.
As a result of MayRose's various challenges during the year of her birth, she has since been hospitalized eight times in 2009, including in January, twice in February, March, May, July, August and September. She also was hospitalized in January 2010. Most recently, she was hospitalized in April and again in May 2011. Most of her hospitalizations were due to her contracting a virus which raised her body temperature and lowered her white blood count. She remains in the hospital, on average, for five days at a time until her white blood count increases and her temperature returns to normal. During April and May of 2011, she was hospitalized for six weeks and received two weeks of outpatient care at Los Angeles Childrens Hospital while staying in the Ronald McDonald House. MayRose is on numerous medications.
MayRose's pediatric brain injury caused developmental delays, cortical visual impairment, and makes her prone to having seizures. In addition to receiving rehabilitative therapy four times a week, MayRose has multiple doctors appointments a month. She is seen regularly by multiple care-providers, including a Pediatrician, Hematologists (DBA), Gastreoenterlogists (reflux), a Physiatrist (rehabilitation), a Neurologist (brain injury), an Orthopediologist and Endocrinologist (bone development), and Opthomologists (visual impairments). She also is followed by an orthotic specialist who fitted her for leg braces prescribed by her physiatrist. Her caregivers are strong supports of the Sarah Jane Brain Foundation.
As a result of MayRose's Diamond Blackfan Anemia, she must receive blood transfusion at Los Angeles Children's Hospital once every three weeks for the rest of her life. She has a device called a Port that is located under her skin which is accessed in order to provide the transfusions. She also has a G-tube in her stomach to help her receive the appropriate amount of nutrients because her brain damage has affected her ability to swallow foods and liquids. Although she loves to eat, it takes her longer than most children, thereby requiring a baseline amount of formula to be provided through the G-tube.
