Saturday, October 25, 2008

Extra Special Thank You's!!

We recieved the most wonderful gift yesterday from all of our CHARGE family across the world. Words can't express enough thanks to all our friends who contributed and produced such a fantastic scrap book of Lucas including special thoughts and words of encouragement. We can't figure out how you guys did it; ten moms from literally across the US and the UK each putting their own piece together combining to make such a precious tapestry of love for us.

Thank You so much seems like such small words for such a BIG expression of love, all we can say is we know we are loved, we love in return and will always be connected to you all. Thanks for being there for us and we are always here for you... ...


This is LOVE:






Also, thanks to one of my closest friends, Anna, for creating this piece of art for Lucas's room:


Thanks to the PICU unit for the hands and feet impressions:


Thanks to our family for the Lucas's room make over:


We are currently creating a shadow box which will contain some of Lucas's favorite things and will post pictures when it is complete... ...

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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