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Case M.
Pennsylvania
Birth Date - December, 21, 2010
Main Diagnosis - Multiple congenital anomolies
THEME: CARS
Biography
Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. A week or two after that "normal" ultrasound we got a call, there were some problems and we needed a second level sonogram. We ended up with 15-20 second level sonograms. The diagnosis of our baby boy was grim. We were told to prepare to burry him.
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> He was born beautiful, and tiny. He was less than 3 weeks early but only 2 pounds 13 ounces and less than 14 inches long due to IUGR and many health issues. He was born December 21st and we spent our Christmas and following holidays at CHP and the Ronald McDonald house. He was sent home 38 days later and I was told he'd be fine. He'd learn how to nurse and would grow. Every day was a struggle. I fought to feed him. He needed to go to CHP all the time to see several specialists. WE'd add a new one or two often. He was only 10 pounds at 11 months and was malnourished despite my tireless efforts to feed and grow him. They inserted a G feeding tube.
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> He is now 2. Every month we visit CHP (2+ hours from our home) 1-4 times. Every month they find new problems but haven't found a main diagnosis. WE are in the process of a Whole Exome Sequencing Genetics test. It takes 6 months for results. He was born with many birth defects, heart issues, a non functioning, multi cystic dysplastic left, kidney. Brainstem abnormalities, a tethered spinal cord, issues in his left ear drum, sub mucous cleft pallet, GERD, hyper-gag reflex, aspiration issues, slow motility, plus probably more I'm forgetting. He was diagnosed with FTT and is J-tube fed. He has had 5 surgeries and will have many more. He has 22+ doctors, specialists and therapists and is a continual blessing to all!
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