Starting at the beginning of my experiences with Akron Children's would start with my son's stay in the NICU at birth. I had a normal pregnancy that went 9 days beyond my due date. After an emergency C-section and my son and I were in different hospitals. We were told by day three he wasn't going to make it, but the next day he started getting rid of IV medications and catheters. Then he started having seizures in the NICU. He spent 3 weeks in the NICU.
Tristan is now 10 years old, happy, full of giggles, awe inspiring daily and ALL BOY. He has cerebral palsy, spastic quadriparesis, and is non-verbal, blind (CVI), has a seizure disorder (on-going), is developmentally delayed, and has multiple disabilities.
He had a brain bleed that self resolved in the first year. It was discovered after a fall. He receives Botox injections quite regularly. He has been through tubes being placed in his ears at 18 months for multiple ear infections. He’s had hip surgery (left) at age 3 for dysplasia. We’ve done the Baclofen pump trial. He’s had hip surgeries on both left and right hips at age 9. The left hip was for dysplasia. The right hip was because of wind-swept effects. He also recently received a g-tube after years of eating dairy-free pureed foods.
We’ve done the SPICA cast and the abductor pillows. He wears diapers. He has cortical vision impairment (CVI 20/5000). He sees light and darkness, but he’s afraid of darkness. It can and will send him in to a panic (we drive with the interior light on at night). Because of the vision problems, he has anxieties of new things and places and needs reassuring or just time to adjust to what is around him.
He is non-verbal, but is quite expressive. That doesn’t mean when he’s sick we can instantly figure it out. It becomes a guessing game and sometimes we end up at the ER just because we can’t figure it out. They say he’s developmentally delayed, but he gets more than he’s given credit for knowing or understanding. Tristan is allergic to dairy and eats pureed foods. I’m sure I’m leaving things out so just ask.
I homeschool Tristan. We spend all day together. We go to therapies, various activities in the community, doctor appointments, stores, to parks, and even been known to eat together. My husband and I are licensed foster parents and are in the process of adopting siblings for Tristan.
I hope this doesn’t come out as a blurt of information that may make you think it’s overwhelming. I have 9 years of experience with my son. I am more than happy to share any information that has gotten us to where we are today. I’m happy to answer questions, give ideas, or just listen when you need someone to listen. I know how I have felt and not all parents can see eye to eye with what you’re going through. Your new life takes twists and turns and it’s nice to have someone in your corner to talk to about everything from diaper deposits to not being able to wash the dishes. I can relate.
Tammie is a parent mentor for these conditions: Allergies, Anomalies of Cortical Development, Blindness, Cerebral Palsy, Cortical blindness, Developmental Delays, Ear Infection, Hip Dysplasia, Lactose Intolerance, Seizures, Spastic Quadriplegia.
Tammie is a mentor for these care services: Adoption, Allergy, Cerebral Palsy, Developmental Delay, Ear Nose Throat (ENT), Eye, Feeding and Nutrition, Neurology, Neurosurgery, NICU, Orthopedics, Rehab
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