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