Sign-In
Cart
An Amazing Little Girl with Rhombencephalosynapsis
Paperback
Biographies GeneralGeneral Parenting
ISBN13: 9780578360874
Publisher: Stephanie Detjen Costabel
Published: Feb 24 2022
Pages: 246
Weight: 0.81
Height: 0.56 Width: 6.00 Depth: 9.00
Language: English
Can you say
Rhombencephalosynapsis?
This is the story of an extraordinary girl living with an extremely rare brain malformation.
With over eighteen surgeries and countless hospitalizations and medical procedures, this incredible child has overcome more obstacles in her short six years of life than most of us endure in a lifetime.
Rhombencephalosynapsis gave way to a set of other difficulties including: Hydrocephalus, Chiari Malformation, feeding tube dependency, Laringomalacia, Microtia, hearing and visual impairment . . . but through it all, this child displayed a mind so brilliant and adaptable that she amazes and inspires us all.
I would like to offer hope to those new to the journey of parenting a medically fragile, special-needs child. I want to share the realities we lived with- the challenges, the pain, the joy, and all we have learned.
I would like to increase awareness, sensitivity, and familiarity to what life is like as a mother to a medically challenged child.
They said she wouldn't, she did . . .
They said she couldn't, she can . . .
They said she won't, but Oh she will
Rhombencephalosynapsis/ Cerebello- Trigeminal Dermal Dysplasia Facebook Support Group
Also in
Biographies General
Bluesland: Portraits of Thirteen Major American Blues Masters
Pete Welding (ED.)
Toby Byron (ED.)
Hardcover
Karl Popper - The Formative Years, 1902 1945: Politics and Philosophy in Interwar Vienna
Hacohen, Malachi Haim
Hardcover
Too Much and Never Enough: How My Family Created the World's Most Dangerous Man
Trump, Mary L.
Hardcover
The Children of Athena: Greek Intellectuals in the Age of Rome: 150 Bc0-400 AD
Freeman, Charles
Hardcover
Make It a Double: From Wretched to Wondrous: Tales of One Woman's Lifelong Discovery of Whisky
Sackier, Shelley
Hardcover
The Code Breaker: Jennifer Doudna, Gene Editing, and the Future of the Human Race
Isaacson, Walter
Hardcover
Agents of Chaos: Thomas King Forçade, High Times, and the Paranoid End of the 1970s
Howe, Sean
Hardcover
An Enemy Such as This: Larry Casuse and the Fight for Native Liberation in One Family on Two Continents Over Three Centuries
Correia, David
Hardcover
Better Living Through Birding: Notes from a Black Man in the Natural World
Cooper, Christian
Hardcover
Florence Kelley and the Nation's Work: The Rise of Womens Political Culture, 1830-1900
Sklar, Kathryn Kish
Paperback
The Secret Life of the Savoy: Glamour and Intrigue at the World's Most Famous Hotel
Williams, Olivia
Paperback
The Devil's Diary: Alfred Rosenberg and the Stolen Secrets of the Third Reich
Wittman, Robert K.
Kinney, David
Paperback
The Badger: The Life of Bernard Hinault and the Legacy of French Cycling
Fotheringham, William
Paperback
Living with a Wild God: A Nonbeliever's Search for the Truth about Everything
Ehrenreich, Barbara
Paperback
The Butcher, the Embezzler, and the Fall Guy: A Family Memoir of Scandal and Greed in the Meat Industry
Cherington, Gretchen
Paperback
My Own Devices: True Stories from the Road on Music, Science, and Senseless Love
Dessa Wander
Hardcover
How to Be Okay When Nothing Is Okay: Tips and Tricks That Kept Me Alive, Happy, and Creative in Spite of Myself
Lawson, Jenny
Hardcover
Nobody's Girl: A Memoir of Surviving Abuse and Fighting for Justice
Giuffre, Virginia Roberts
Hardcover
A Walk in the Park: The True Story of a Spectacular Misadventure in the Grand Canyon
Fedarko, Kevin
Paperback
Catch the Devil: A True Story of Murder, Deception, and Injustice on the Gulf Coast
Colloff, Pamela
Hardcover
Dangerous, Dirty, Violent, and Young: A Fugitive Family in the Revolutionary Underground
Dohrn, Zayd Ayers
Hardcover