Caring For Your Child With Hydranencephaly
Information For Families
This book contains both information and hope
for families of children with Hydranencephaly. This is the 2nd edition of our
book and is greatly expanded from the first.
When parents are given the diagnosis of
Hydranencephaly for their child they are often told that there is no hope for
their child, that the child will never recognize them, and that they won't live
long. Unfortunately many children do die at a young age, however many do not. In
this book are the stores of over 50 children, some of whom have now gone Home to
Heaven but most are still alive and are daily disproving the grim prognoses. As
you read the stories you will meet families who are going through experiences
that are very similar to yours
This book also contains practical information
on caring for your child, with information from various websites along side the personal
experiences of families. It is not mean to be a medical textbook, but to provide
practical information all in one place. Think of it as a "portable
website"
Some chapter titles are:
What Causes Hydranencephaly
About Hydranencephaly
Sensory Stimulation for your child
Taking Care of You
How to "read" your child
Physical Development of a child with Hydranencephaly
Feeding Your Child
There is also information on the various
conditions that often accompany Hydranencephaly such as:
Hydrocephalus
Epilepsy
Illnesses
Breathing Support
This 2nd edition of the book is almost 4
times as long as the first one was and contains a lot more information along
side personal experiences of families in each of the areas discussed. Due to the
length of the book it is being released on cd rather than in print. Parents can
then print out just the information that applies to their child at any one
time.
It is available for a suggested donation of
$20
To purchase a copy of the book,
please contact Jeanene.
Or
via snail mail to:
Jeanene Headlee
9211 N. Condor Place
Tucson, AZ 85742
USA
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