I hope you have a few minutes to read this. I have tried to compile some information for you about Ryan’s condition. For more detailed information on all of these terms, please see the links in the sidebar (Medical Terminology).
Ryan was born with Hydrocephalus, Dandy-Walker Malformation and Schizencephaly. These are all medical terms for the defects of his brain. Please understand that these occurred very early in Ryan’s development (8-14 weeks conception).
Because of the formation of his brain, other conditions developed. These include epilepsy (seizures), Gastro Esophageal Reflux (severe-acid reflux), dysphasia (inability to swallow correctly), hypotonia (poor muscle tone), and scoliosis (curvature of the spine).
Obvious disorders such as profound mental retardation and severe motor-delays have been present from his very development.
Due to medications taken and complications from the above disorders, Ryan has also encountered problems with his teeth and gums and most seriously, his lungs. Over years of
aspiration (moisture entering the lungs), Ryan now suffers from Asthma and COPD (chronic obstructive pulmonary disease).
Ryan has also developed Lennox-Gastaut Syndrome. This basically means that Ryan is being treated for every type of seizure there is. He is given medications of every sort to control these seizures as well as his VNS (stimulator in his chest).
I just wanted you to see some of what Ryan has fought against for so many years. He is such a fighter. God has truly performed hundreds of miracles in the fact that Ryan has survived such tremendous odds against him -- daily.
Please pray for him.
Wednesday, June 11, 2008
Tuesday, June 10, 2008
A Purpose
This blog is here to share how God has taken care of Brother, to keep everyone updated on his life, to request prayers on his behalf, and to encourage, uplift, and inspire.
Some history for those who aren't familiar with Ryan's life:
Ryan was born on August 1, 1996. A beautiful baby boy, he was eight pounds and nine ounces with flaming red hair. But beneath this healthy exterior, he had major birth defects that were irreversible. Since his birth, God has brought him through more than twenty major brain surgeries, serious chemical imbalances, and countless seizures that he contends with daily.
Ryan has a rare condition called Dandy-Walker Syndrome. This disorder causes the patient's brain to be deformed from its generation in the womb. Complicating this, Ryan has a portion on the left side of his brain that never developed (Schizencephaly). Further, he has another condition called Hydrocephalus, where the brain and spinal courd do not circulate the body's spinal fluid correctly, causing pressure on the brain, and if left untreated - death.
From day one, Ryan had drainage tubes placed inside his brain to control the spinal fluid, medication to control seizures, and countless other treatments for a poor respiratory system. He cannot walk or talk. He does not eat by mouth because he is unable to swallow properly. He requires assistance at night just to breathe. Doctors have said from the beginning that Ryan would be vegetative and predicted a lifespan of no more than 9 months.
That all sounds really sad, right? Well, hold on to your seats because here's the "flip-side." Ryan is not vegetative. Instead, his little personality and wit bubble over when he smiles. Through the power of the Almighty, he has accomplished more in his almost thirteen years than most do in a lifetime. They are as follows:
Awhile back, Ryan was placed in Hospice care. This is a service for people who are at the end of their lives. It is designed to allow the patients to stay at home, in comfort, so they can spend their last days with the ones they love.
Ryan had symptoms that indicated that his nervous system was shutting down. Hospice was called in and we all tried to prepare for what we thought was going to be the end of a very courageous and blessed life. But just like my God, it was discovered that Ryan was having an adverse reaction to a treatment for his seizure disorder. With some very mild alterations to Ryan's care, the terminal symptoms that placed him in Hospice care disappeared.
Thanks be unto our Lord, Jesus Christ for all he has done for Ryan and our family. I can't wait to see what God is going to do next with this miraculous young man.
Some history for those who aren't familiar with Ryan's life:
Ryan was born on August 1, 1996. A beautiful baby boy, he was eight pounds and nine ounces with flaming red hair. But beneath this healthy exterior, he had major birth defects that were irreversible. Since his birth, God has brought him through more than twenty major brain surgeries, serious chemical imbalances, and countless seizures that he contends with daily.
Ryan has a rare condition called Dandy-Walker Syndrome. This disorder causes the patient's brain to be deformed from its generation in the womb. Complicating this, Ryan has a portion on the left side of his brain that never developed (Schizencephaly). Further, he has another condition called Hydrocephalus, where the brain and spinal courd do not circulate the body's spinal fluid correctly, causing pressure on the brain, and if left untreated - death.
From day one, Ryan had drainage tubes placed inside his brain to control the spinal fluid, medication to control seizures, and countless other treatments for a poor respiratory system. He cannot walk or talk. He does not eat by mouth because he is unable to swallow properly. He requires assistance at night just to breathe. Doctors have said from the beginning that Ryan would be vegetative and predicted a lifespan of no more than 9 months.
That all sounds really sad, right? Well, hold on to your seats because here's the "flip-side." Ryan is not vegetative. Instead, his little personality and wit bubble over when he smiles. Through the power of the Almighty, he has accomplished more in his almost thirteen years than most do in a lifetime. They are as follows:
- Author: He has written a chapter in the lives of everyone who takes the opportunity of getting to know him.
- Actor: He has played a heart-wrenching role that causes us to thank God daily for things often taken for granted.
- Sculptor: He has molded his brothers and older sister into people with unusual compassion and understanding for others who are "different."
- Architect: He has framed a faith within me that would not have existed without him.
- Escape Artist: Ryan has defied death numerous times.
Awhile back, Ryan was placed in Hospice care. This is a service for people who are at the end of their lives. It is designed to allow the patients to stay at home, in comfort, so they can spend their last days with the ones they love.
Ryan had symptoms that indicated that his nervous system was shutting down. Hospice was called in and we all tried to prepare for what we thought was going to be the end of a very courageous and blessed life. But just like my God, it was discovered that Ryan was having an adverse reaction to a treatment for his seizure disorder. With some very mild alterations to Ryan's care, the terminal symptoms that placed him in Hospice care disappeared.
Thanks be unto our Lord, Jesus Christ for all he has done for Ryan and our family. I can't wait to see what God is going to do next with this miraculous young man.
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