Saturday, June 5, 2010
Rehabilitation and BRI in Little Rock, Ar
Mom is going on 4 days in rehab now. Very slow hopeful progression! Have recently found out another small urinary infection once again, being restrained with another round of antibiotics; moms heart is very weak and is a little irregular anyways.. From the moment morning comes they have her up and stirred, moving everything physical, occupational, and speech..so we are seeing slow results. My God is Faithful and there IS so much Power in the name of Jesus..He is effecient and supplies our every need..this is my breath and prayer for her. She is the stongest and selfless person i know. Thank you again for keeping up with our family. There will be a Joy Unheard of and Unseen when this is all over!!!!! Let the Miracle be for my family.
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Lucas was born to us 5/10/07 and was soon diagnosed with CHARGE. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Lucas's anomalies included with his case of CHARGE include minor heart defects of ASD and PDA, bilateral choanal atresia repaired at four days old, undescended testes repaired at seven months old, and ear abnormalities; also he has reflux and aspirated while feeding shortly after being born and thus had a G-tube and Nissen Fundoplication at five weeks old. Additionally he has PE tubes, very low muscle tone and facial palsy on his right side. Lucas was diagnosed with Primary Pulmonary Hypertension at 12 months old. He showed us how to shine through the rain as he lost his bravely fought battle and entered into Heaven on 10/02/08. He was our miracle on earth the 507 days we spent with him. For more information, visit chargesyndrome.org
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