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Kylie's Journey.....Our "Earth Bound Angel"

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Uploaded on Jul 26, 2009

This video is the documentation/pictures of my granddaughter, Kylie from birth to 5 yrs old, she is now 7. This is her fight to live, learn, and be accepted. At 12 weeks in utero an ultrasound showed Kylie was developing fine, by 18 weeks in utero there was fluid found by ultrasound in her 3rd ventricle of her brain, by 23 weeks there was more fluid and some in the 4th ventricle. Kylie was born "Full Term" after 26 1/2 hrs of labor the doctors FINALLY did an Emergency C-Section, they said she had stroke in utero with no known cause, she was missing her corpus callosum, part of her vermis, etc. her left side was affected & disabled. From cranial surgery at 10 months old to unfuse the bones in her skull that formed in a triangle shape do to stroke & damage, she was in a coma state for five days fighting for her life!, left heel cord surgery at 3 1/2 yrs., heart surgery at 4 1/2 yrs, ( 6 holes in heart, 1 large, 5 pin holes , in right atrium & 2 devices, they discovered 1 hole after birth but were waiting for it to CLOSE on it's own, it never did, an echo at 4 yrs. showed the hole getting bigger and 1 pin hole, during surgery they discovered MORE HOLES!)) , several vision tests & glasses and ear tubes at 5 yrs., and sadly several life threatening seizures, (Seizure Disorder) and a Thyroid Disorder & illnesses like Flu & Pnuemonia, Staph, etc. My grandaughter, MY HERO, never gives up. Kylie ALWAYS has a Smile and a Hug for everyone and has confused and boggled many a doctor & specialist, therapist and teacher with what she can do and what she has already acheived. We were told before & after she was born, that basically she would be a vegetable.... if she lived....I guess they were WRONG! All her doctors/specialists have NEVER seen a case like Kylie's and her 1st Pediatric Neurologist said he may as well throw away all his books because she is accomplishing things that she never should have even did! I guess that's WHY she was chosen to survive, to TEACH them and OTHERS about being disabled and not to just look at the medical portion, LOOK ALSO AT THE CHILD & HAVE FAITH! I've always believed that children are a product of their enviroment, the more you love & stimulate them with learning and life, the better off they will be. That's why "OUR FAMILY" never gave up on Kylie, we have always treated her like any "Normal" child, even with her disabilities. I guess that's why she has always fought to live & learn, she has never considered herself "disabled" OR "different", she just sees herself as a kid. Unfortunately there are others in this world though who are very quick to point it out to her & us, about her disabilities, to them I say, "God help you if YOU or a Loved One ever have a car accident and suffer brain damage, or a stroke, etc., you could be like Kylie, learning everything in a slower different way!" Please never be so quick to judge, pity or LIMIT A disabled child, just show you care and give them the least restricted enviroment possible to LEARN, that's all we ask...UPDATES:: Kylie now walks without a walker, she talks sentences, seizures have lessened since her heart surgery, last one 12/19/2009! We ARE seeing signs of ADD & OCD & some "Austisic Tendencies" now! Her Thyroid will always have to be monitored, it causes moodiness, bowel problems, etc. Kylie was Genetically Retested in 2007& it revealed a Y17 defect never seen before that wasn't found at Birth, her Mom doesn't carry it. Sleep Apnea Testing Done 2/12/2010, revealed that Kylie stops breathing 3 times an hour for aprox. 8-12 seconds, not an obstruction, caused from brain function, the good news is she doesn't drop oxygen much, sorta like a regular person holding their breath the Drs. say. Kylie loves to sing, dance, swing, bike, swim, play her "Smart Cycle", play dress up & listen to Hannah Montana & Justin Bieber, like most little girls & most importantly, she has the ability to learn & think, (age range 2-6yrs scattered learning) it might take her a little longer sometimes to grasp different concepts, but that's ok, she does eventually and she's ALIVE! Yes, she may have some "ticks", like repeating things now & then when she meets NEW People/Situations or stimulating tendencies like shaking her hands & head when she gets nervous or excited, she has a tendency to be very logical & sometimes stubborn but we accept that she's different & a special gift. We don't know how far Kylie will progress, she still has a cyst near the brain stem that can't be removed, we were told it shouldn't grow by her present doctors, we are STILL looking for ANSWERS! What I do know is she will live life to it's fullest and if we can in anyway help her to achieve her goals, we will as a Family! Thank You For Watching And I Pray This Gives Other Families HOPE...God Bless.
The song that is playing through out this video , "Earth Bound Angel", I wrote for Kylie, this was my gift to her........she has given us so many already...
Country By Audrey

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