Jenna with her Mother

When Jenna was born the doctors gave her three days to live.  They didn't know how excited her two sisters and two brothers were to see whether she'd be a boy or girl.  Our little tie-breaker brought indescribable joy at her arrival followed by the pain of learning her prognosis.  They said if she made it initially not to expect her to live to one year.  The thing is nobody told Jenna!  She's now four years old.  She goes to pre-school three days a week for OT, PT and Speech.  She's also followed by the Commission for the Blind.  Jenna's like a little rock star at school.  They just rave over the smallest progress.  I wouldn't have entertained the idea of sending her to school until we went on a trip to Disney through Make-A-Wish.  Everything I'd been told about T18 kids up until then was contrary to what we'd experienced.  She loved every sight and sound from 3-D movies and parades to fireworks and rides.  On the plane ride home she squealed with delight because she thought the take-off was the beginning of an amusement ride.

Daily life with Jenna isn't easy.  She's followed by a pulmonologist for trachea malasia which requires a bi-pap when she sleeps.  She needs oxygen when she has a cold and various medications to help keep her airway open.  Jenna also has a Nissan for reflux and is followed by GI, a Nutritionist, and Feeding and Nutrition Clinic.  She wears MAFOS for low tone and a brace for scoliosis which her orthopedic surgeon hopes will stay the need for surgery until she's a little older.  She recently started a medication from neurology for seizures.   

Each day with Jenna is a gift.  I am grateful to God for the opportunity to raise and nurture her for as long as He allows.  My hope is that medical science and technology will be able to fire up some neurons and make connections to resolve her cognitive delay much like the hope of correction for her scoliosis with the placement of an adjustable rod.  Meanwhile, we're happy to take the ride with its ups and downs, no matter where it leads. 

Back to Trisomy 18 Stories

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.