Background & History:

Katie was born microcephalic due to a common virus that Mom had not previously come in contact with. This virus - cytomeglovirus (CMV) was contracted in the first trimester and caused considerable brain damage. Katie was born with a small head circumference and the brain is peppered with calcium deposits. The virus also attacked nerves, reducing Katie’s ability to see and hear. She is legally deaf and blind, however she does a very good job with her residual vision and hearing. With hearing aids, she is able to hear and respond to most sounds and most importantly has a happy disposition when healthy.

The CMV virus left Katie as a spastic pentapalegic (4 limbs and head). At an early age she was able to eat baby food but continually had pneumonia. Diagnosis lead to the insertion of a G-Tube and a Nissan Fundaplacation. These procedures did not resolve the pneumonia problem and Katie ended up having an emergency tonsillectomy and adenoids removed.. To date she is still G-Tube fed. The pneumonia was resolved through management using asthma treatments.

The amount of time and effort that goes into the care of Katie is enormous. The medical procedures to manage her problems are numerous and time intensive. The concentration needed to maintain good health is like the atmosphere in the movie "The hunt for Red October". Each procedure, observation must be recognized, analyzed and related to the other events of the day or past few days. Obviously, signs and symptoms are missed as the need is to intense for a family setting that has more than one child. For example; missing the first sign of constipation reduces the ability to prevent, manage or reduce the problem and allows a situation to build that will cause great discomfort and pain which not only the child suffers through, but so do all the other members of the family. Nobody likes to listen to someones discomfort or to listen to one crying or screaming in pain.

Katie’s family is made up with two siblings. A sister 3 years older (15 yrs old in 1999) and a brother 4.5 years younger ( 7 in 1999).  Mom has a full time occupation looking after our wonderful little girl. This was even more of a challenge during Davey’s pre-school years. Mom has her hands full. Big sister is off to school during the work/school week and has lots of home work every day. Dad has full time employment as a Controller and brings home work to do on some evenings. Life is very busy in this family.

Tremendous irritability has plagued Katie’s life. She has had periods of good health and happiness but pain and irritability have been a recurring phenomena. To that end we still search but our ability to manage them has improved dramatically. The source of the pain has not been easy to ascertain due in part to Katie’s non-verbal nature. The evidence gathered over the years and treatments implemented have helped enormously to improve the quality of life Katie now enjoys. Some of the experiences we have gone through can be found on the various sections of Katie’s Web Page.