KAYLEE
I am the mother of 4-year old Kaylee, who was diagnosed with Moebius Syndrome
at
the age of 7 weeks. She stayed in Children's hospital for the first eight
months of her life
because of pulmonary instability. She was then in and out of the hospital
with pneumonia
and RSV for the next two years.
She is still unable to swallow and is fed via g-tube. She was born with
tracheomalacia
and laryngomalacia. She has a trach and was just recently weaned off her
home
ventilator. Her pulmonary and ENT drs. are hopeful she will be able to get
her trach out
sometime this summer. She was also born with bilateral club feet and bilateral
hip
dysplasia, both of which have been surgically repaired. She is currently
learning to walk
with the help of a walker.
Recently, Kaylee was tested by her therapists, and determined to have
sensitivity
problems. She was diagnosed as having modulation problems. She had problems
with
using her imaginations and playing with toys properly. She only wants
to drop or throw
them over and over again.
Does anyone else have this type of problem, and if so, how are you dealing
with it?
Thanks,
Melissa
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