Thursday, April 2, 2009
today is six months since the devastating day in childrens hospital. around 4:00pm is when we lost our lucas today. Very present and near our hearts is such emptiness for him. Wanted to share with all that we could NOT have made it without you. even now we are stronger having known and build such wonderful relationships with all of our charge friends around the world. Thank you for all you are and that for us you really do care!! As i sit and ponder today of all lucas life from birth till now, everything is a bit hazy..the only thing standing out is THAT DAY, the heartcathe and the downward spiral from there....we are quiet in our hearts as we remember what a joy and honor it was to raise and love this precious lump of clay!! Love everyone and hope all is well with whom checks in on us thru our blog!! Pray for grace and peace continually. TX
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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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