Hailey H.
New Jersey
Birth Date - September 7, 2009
Main Diagnosis - Cerebral Palsy, Epilepsy
THEME: PURPLE (To include her favorite things: HEARTS, FLOWERS, BUTTERFLIES, MUSIC) and accepting 2 patterns with the inspirational word “BELIEVE” on them
Hailey's Story
Hailey Rosina was born on Labor Day in 2009 after an uneventful pregnancy. She flat lined during labor and required resuscitation when she was stillborn. She was immediately transferred to Thomas Jefferson University Hospital in Philadelphia for head cooling. Her core temperature was lowered for 72 hours in the hopes of stopping any further brain damage. She suffered a traumatic brain injury from prolonged lack of oxygen resulting in a diagnosis of Hypoxic Ischemic Encephalopathy grade III. She was dependent on a ventilator, was having many seizures, and her prognosis was grim. I was told if she lived, she would have severe disabilities and developmental delays. She, however, turned out to be a fighter!
She was removed from the ventilator after 3 weeks. She had surgery to place a feeding tube in her belly at 6 weeks old, and she came home at 8 weeks old seizure-free and off all medications. She was immediately enrolled in Early Intervention and began a rigorous therapy schedule including Physical Therapy, Speech and Feeding Therapy, and Occupational Therapy. She learned to crawl at 18 months! She was diagnosed at 22 months old with Spastic Diplegic Cerebral Palsy...her legs are mostly affected, but she does have weakness in her trunk, arms, and facial muscles as well. She cannot walk independently, but can walk short distances in a walker. She wears braces on both legs...they are her favorite color, purple. Her seizures came back around 2 years of age, and we are still trying to control them with medication. She will likely have Epilepsy her entire life. She has moderate/severe bilateral hearing loss and wears hearing aids (again, purple). She is still fed 100% via a g-tube in her belly. She has gastroparesis (her stomach is partially paralyzed), oral aversion, oral motor skills delay, and is an aspiration risk, so she does not take much by mouth. She does love vanilla pudding, though!
Hailey is the most determined and amazing child! She doesn't let anything stop her. She now attends inclusion kindergarten and loves it, even though it's a very long day for her and she tires easily. She still has an intense therapy schedule. She just received her very first wheelchair (of course it's purple) and loves the independence it gives her. She knows she's different, and does get upset once in a while when she can't do something her friends can do, but she keeps trying and most times will figure out a different way to do it! She is my hero.!!!
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"Thank You"
There are not adequate words for how thankful I am for Hailey’s quilt! It is amazing and beautiful and I cry every time I look at it!!! You can just FEEL the love radiating from each and every square. I cannot thank you all enough. Thank you…so much!!!!
