Team Hayden

membrane in the nose didn't open). After the transfer, Hayden had a cat-scan that showed a blood spot on the brain. were not concerned at the time and said it would absolve. Hayden displayed extreme irritability and arching and was given morphine and ativan to help with the pain. proceeded a week later with surgery for the choanal atresia, again, he was in pain, irritable, and arching. A week later, after we were given clearance to go home, Hayden went into complete metabolic acidosis and was seizing. He suffered a massive brain injury- a stroke. The blood spot in the brain didn’t absolve. It was really a clot that exploded and turned into a stroke and affected both sides of the brain to the highest degree. It is called bilateral grade IV brain bleed with interventricular hemorrhage and periventricular leukomalacia (damage to white matter/cysts in the brain). His brain looked like swiss cheese. There were no explanations of how, why, what next….other than pray. We spent 82-days in the NICU. WE NEVER LEFT. Doctors said ALL the things Hayden wouldn’t do, specifically: live, see, eat, feel, hear, sit, crawl, stand, think, have a long life, etc. Hayden is a patient of Community Hospice of Northeast Florida/PedsCare, a palliative care program for children with life-limiting serious illness/medical fragility. He receives occupational, physical, speech, feeding, vision, assistive technology, hippo, aqua, massage and music therapy. Healing services are provided by The Jacksonville Jewish Center where Hayden is often on the misheberach. His service providers from birth to today include (or have included): Agency for Persons with Disabilities (APD), Medicaid, St. Johns County School District/Cunningham Creek Elementary, Occuplay, Inc., Intentional Play, Massage by Catherine Gore, Brooks Rehab, Wolfson’s Children’s Rehab, NuMotion, Fletcher’s Medical Supplies, 180 Medical, the Horse Sense and Sensitivity, Physio Power, Sensational Kids, ELKS, Florida School for the Deaf and Blind, Division of Blind Services, Josie Davenport ~ Anat Baniel Method Therapy, Wellspring Health Center, Early Steps/Early Intervention, Majestic Oaks Kids Connection, The ARC of Jacksonville, Children Medical Services, Epilepsy Foundation of Florida, New Heights of NEFL, Dr. Alan Nathans Family Chiropractic Center, 210 Family Chiropractic, and Relaxation Sensation. Hayden is a regular patient of Bower Lyman Center for the Medically Complex, Pediatric Eye Consultants of NEFL, Nemours Children's Specialty Care, University of Florida Gainesville/Jacksonville Pediatrics, and Wolfson Children’s Hospital; ans sees specialists in neurology, speech/language, gastroenterology, general surgery, otolaryngology, geneticis, physiatry, orthopedics, and neurosurgery. His diagnosis is: choanal atresia, stroke/thrombosis, seizure disorder/infantile spasms, reflux, cortical vision impairment, optic nerve atrophy, chronic incontinence, gastroparesis, restrictive lung disease, gj-tube fed, and severe global developmental delay with spastic quadriplegia cerebral palsy. Hayden is aware of his family, especially his 12 year old brother, Evan and his furry babies. He is responsive with smiles, sometimes coos and he loves singing to music, going to the pool/beach, feeling the wind on his face, and being around friends and family. Our miracle dude is a fighter! We know he can hear! He is tracking some with his eyes and shows shift of gaze on his Tobii eye gaze system! He won’t give up and neither will we!! We still feel new to this journey, unsure, fragile, raw, scared and really weak to ask for anything. We are typically the givers. Any support is appreciated. http://teamhaydenjax.wordpress.com/donate/

The Team Hayden page is not only to show the amazing little seeds of joys and triumphs Hayden makes, but it is to help educate and advocate for other families in a similar situation. It takes a village. xoxox Team Hayden