Thursday, October 16, 2008

Cards & Letters / Thoughts & Prayers

The card above is one of hundreds our family has received concerning Lucas. This one is from his friends made over the coarse of his stay in the PICU at ACH. Words can't express our thanks to the staff there for making his stay and last days so happy for us and him.

Thank you all so much for your expressions of love, condolences, and respect for us and Lucas; like him they will never be forgotten.

Two weeks have passed and the pain is dull and constant as we try to breathe and move these days; we are thankful for our Family, Friends, Faith, Hope, Love, and all the great memories of our Blue Eyes... ...

cute picture I had forgot about and just found... ...

sleeping beauties... ..
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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