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
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.
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.