A Project Celebrating Differences and Triumphs
Amelia is Beautifully Different
Meet Amelia. Amelia is a true warrior and a survivor. Born at just 23 weeks and weighing only 1 pound 2 ounces. Amelia is a surviving twin. Her sister, Grace, was with her for only 2 hours after birth. Amelia has a grade 4 and a grade 2 intraventricular hemorrhage (brain bleed), Hydrocephalus, Hemiplegic Cerebral Palsy, CVI (cortical vision impairment), and chronic lung disease. Amelia spent 176 days in the NICU. During that stay she had 6 surgeries, most pertaining to her hydrocephalus. She then had 4 more surgeries after coming home, for a total of ten surgeries. She will be scheduled for surgery number eleven this fall to remove her tonsils & adenoids.Through all this, she is still such a happy, smiley, adorably amazing 3 year old girl! Amelia is Beautifully Different!
Intraventricular Hemorrhage (Brain Bleed)
Amelia was diagnosed with Intraventricular Hemorrhage at two weeks old. Intraventricular hemorrhage (IVH) is bleeding inside or around the ventricles, the spaces in the brain containing the cerebral spinal fluid. It is most common in preemies with low birth weights (under 3.5 pounds) A grade 2 brain bleed is when bleeding also occurs inside the ventricles. A grade 4 brain bleed is when bleeding into the brain tissues around the ventricles.
Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. Amelia’s Hydrocephalus was caused by her Intraventricular Hemorrhage. A shunt is surgically placed in the brain. It consists of a long, flexible tube with a valve that keeps fluid from the brain flowing in the right direction and at the proper rate (Mayo Clinic).
Hemiplegic Cerebral Palsy
Cerebral palsy—also known as CP—is a condition caused by injury to the parts of the brain that control our ability to use our muscles and bodies. Children who have hemiplegic cerebral palsy have absolutely no use of one side of the body. This means their shoulder; arm, hand, leg and foot are all completely paralyzed. Amelia’s CP was caused by an infection, after her shunt for her Hydrocephalus became severely infected. She was 18 months old at the time. She then had a new shunt placed. During a routine MRI before surgery the doctors then diagnosed her with Periventricular Leukomalacia (the death of the white matter of the brain)
Cortical Visual Impairment
Cortical visual impairment (CVI) is a decreased visual response due to a neurological problem affecting the visual part of the brain. Typically, a child with CVI has a normal eye exam or has an eye condition that cannot account for the abnormal visual behavior. It is one of the most frequent causes of visual impairment in children from developed countries.
Chronic Lung Disease
Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. It is also known as bronchopulmonary dysplasia (BPD). CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of newborn (and especially premature) babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs.
At 3.5 years old, Amelia is completely dependent on her family for everything. She is unable to sit unassisted, crawl or walk. She gets some nutrition & hydration through her g-tube & is able to eat pureed foods by mouth, but does not have the dexterity or coordination to self feed without help. Amelia receives Physical, Occupational & Speech Therapies twice weekly. She also has multiple specialists that she follows up with throughout the year. Amelia is non-verbal so her family depends on her cues for meeting her needs. She is working on a communication device at therapy & they hope to get one approved by insurance for home. When Amelia is not at therapy or at an appointment, she is doing home therapy. She has a stander, gait trainer, power wheelchair & many other pieces of adaptive equipment that are used for strengthening, weight bearing & positioning. Amelia will be starting pre-school two days a week this month!
Amelia’s parents chose the name Amelia Faith because Amelia means “work of God” & Faith because we trust in God’s plan & wthey cannot question it. She is a daily reminder to them to believe in miracles & to never lose hope. Amelia has been through so much in such a short time, yet she still has a smile that lights up the room. She humbles them with her strength, she makes them laugh because she is so stubborn & strong-willed & she amazes them with her intelligence. Her belly laugh is so infectious & her personality draws people in! Amelia is a warrior, she never gives up & she is truly their hero.
Fierce. Strong Willed. Miraculous.
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