Wednesday, July 1, 2009
Hello to all!! Ohh Blake and I love you all so very much. I am amazed at how healing and uplifting it has been to blog again, to hear from all of you. Having others carry and emphasize with us is family. Happy 4th of july to everyone!! We are headed to lake hamilton with family from thurs-monday. This has been a great week so far. Probally the best since our great sadness thanks to our support from you. I am beginning to see daylight.
Subscribe to:
Post Comments (Atom)
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
4 comments:
Oh, MK that is wonderful. Writing has always helped me express my feelings ... as I see it has with you too. I wish your family a GREAT 4th of July, relax and have some fun.
Tracy K.
So, so happy to read the light and peace in your words. So, so happy to know you've been having a great week...and that you're off to be in a beautiful place with your boys...
Hope you are enjoying the lake. Being in the water and sun always seems to make you slow down and take notice. It's peaceful and serene.... great place to recharge :)
Hello my friend. This is a lovely and uplifting post to read. Thinking of you very often with love
Post a Comment