An evening to remember: July 16, 2009
Today we traded in our honda for a bmw convertible. It is a blessing!! Tonight just a bit ago blake wanted to take it out for a spin to see what she could really do. The top is down, mister pierce man tucked away tightly in back behind me, and we are off..Pierce yelled at one point on the interstate "Dad look at the star", then we realized and explained to him it was an airplane. He was having a blast letting his face and hands fold with the wind! For me it is a moment to steal away with all the memories as blakes driving! Pieces of our souls continue to return, new ways of surrendering to the seasons of life!! It is life...This is our life now..We are blessed to have it! I am walking instead of crawling. We love you ALL!!!
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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