What Do You Do When... WANTED TO PUT THIS ON OUR BLOG FOR THOSE OF YOU WHO STILL FOLLOW WITH US: THIS IS A DEAR FAMILY WE KEEP UP WITH, THEIR PRECIOUS MORIAH, BLAKE AND I KNOW TOO WELL HOW BEAUTIFULLY WRITTEN THIS IS.
THOSE OF YOU WHO KNOW OUR STORY WILL SEE WHEN YOU READ THE PARALLELS OF OUR JOURNIES WITH THESE ANGELS. THESE PRECIOUS WORDS HAVE BEEN MADE MORE AWARE NOW ESPECIALLY EMBARKING ON ONE YEAR SINCE THE GREAT SADNESS OF LUCAS. WE ENCOURAGE YOU TO GRAB A CUP OF YOUR FAVORITE BEVERAGE AND SIT BACK TO PONDER...READ..PRAY FOR THIS FAMILY AND THEN FOR US...WE LOVE YOU ALL DEARLY
What Do You Do When... you wake up with a lump in your throat, but don't have anymore tears left to cry it out?..... ..... What do you do when you get home from a long day at the hospital and take a shower, where you can finally be alone and cry in peace - but you still can't and the lump in your throat is still there?It's just been one of those years...
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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