For Savannah's Sake: SAVANNAH'S STORY /Blogging

Tuesday, December 2, 2008

SAVANNAH'S STORY /Blogging

Just wanted to let people know I intend to share more of my story when I find the time. I'm currently now worrying about and working to stop the closure of Savannah's school. In addition to Savannah's needs I of course have 4 other children so my time is always limited, but I want to share our story with the world. The last five years of our lives have extremely challenging and filled with the constant struggle of trying to find the resources to meet Savannah's needs. Not just her daily needs but her needs for the future.

Thank you for visiting the page and when there is time I promise to share more of our journey.

2 comments:

Anonymous said...: Sheri,
I have a son with mild CP and autism. You are amazing and inspirational.

A friend from a special needs moms writing group I'm in has a son that goes there as well as a friend from my church. I am sick over the prospect of them closing the school. I would love to help with the effort to keep it open.

Chrissy Searcy; December 4, 2008 at 7:12 PM
Sheri said...: thank you for writing. The parents are currently trying to brainstorm to figure out how to save the school..it is a shame that we have to do this...after all...isn't it a basic expectation for our children to attend schools that meet their needs? Isn't that one of the reasons we pay taxes in this country..you...as well as I know that caring for a child with special needs consumes most, if not all of our time...why do we have to spend what little energy we have left to fight for something that should be a "given" for our children...we have enough daily battles and hurdles to face ...enough already!! The parents are meeting again soon..we are going to put our heads together then let others know how they can help...will post the results after the meeting!! thank you again !!!
Savannah and Mom; December 6, 2008 at 7:54 PM

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About Ms. Savannah

Savannah was born with cerebral palsy, the result of a terrible car accident I was involved in while pregnant with her.

According to Indiana law Savannah is NOT entitled to receive enough compensation for her injuries incurred as a result of the accident. Policy limits place the maximum value of her life at $80,000. After fees and expenses, she'll have a lot less.How much is you or your child's life worth? Can anyone really put a value on a life? Apparently Indiana Law can!

I am dedicating my life not only to the success and quality of Savannah's life, but to change the laws and the limitations people like Savannah face everyday. I have met with and spoke to many congressmen and legislators on a State and Federal level, trying to get laws changed to help families like ours. Thus far, a bill has been introduced into the House of representatives titled "Savannah's Law". The State has been dragging its feet, but I plan to keep pushing until something changes to improve the quality of life for these children.

This blog is meant to enlighten others to the daily challenges and achievements of families just like ours. This is the life we live and the love we share. This is our story.

What is Cerebral Palsy?

This was a question that I could not answer myself until I had a child affected with it. I am a nurse, but never a pediatric nurse. I experienced patients with brain conditions throughout my nursing career but never educated myself on them. Some examples: muscular dystrophy, cystic fibrosis, multiple sclerosis, etc.

Cerebral palsy is commonly misunderstood. This is a condition that also affects the brain. It is damage or death of brain tissue due to some type of "event". It is not degenerative, which means it does not worsen with time. Whatever damage is present will be what the child will have for their lifetime. The advantage? the child can try to create new connections in the brain through therapy, repetition, and continued hard work in order to work "around" the damage to become more functional.

When I say "event" I mean "something caused it" Somehow, either during pregnancy, childbirth, or the first five years of life, SOMETHING happened to the child to have decreased oxygen to the brain causing damage. Premature babies are at risk mainly due to the fact that their little bodies are underdeveloped and they have increased risk of "bleeding on the brain" and other problems that cause decreased oxygen resulting in damage.

Some examples of "events" are: Severe infection during pregnancy, Severe trauma during pregnancy (as in Savannah's case), an undectected blocked vessel in the umbilical cord during pregnancy, a complicated delivery, premature birth, or head trauma within the first five years of life.

Cerebral Palsy is an "umbrella" term. It covers a wide range of situations. A child MAY have this as PART of their diagnosis IF they have a genetic or hereditary diagnosis, but it is NOT the primary cause of their cerebral palsy. For example : If a child has a bleeding disorder that prevents the blood from clotting properly and it is linked to a genetic history the child may also end up with cerebral palsy as a SECONDARY diagnosis due to the bleeding disorder causing bleeding on the brain resulting in damage. The primary-genetic- diagnosis is the actual CAUSE. Typically this is metabolic in nature. If no metabolic cause is determined, then the "events" during or shortly after pregnancy listed above most likely are the cause and cerebral palsy will be their primary diagnosis.

Whenever I saw children in wheelchairs my immediate thought was "that is awful". The next thought is that they won't live a full life. It seems as if anyone that sees these kids automatically think their conditions lead to an early death. I was guilty of this myself. For children with cerebral palsy as their primary diagnosis, their life expectancy is no different than yours or mine. If a child experiences an early demise with a diagnosis of cerebral palsy it is typically the result of complications from a surgical procedure or illness that their bodies could not fight off. They will have a lifetime of struggles to overcome their disability, but will have a lifetime none-the-less. It is only those that experience the degenerative brain conditions that result in an early demise BECAUSE of their diagnosis.

The other thought I would have is "how do they do it?" I am here to tell you that having a child with a disability isn't difficult when it comes to caring for the child, but the financial impact is astronomical. It affects the parents ability to find proper care so they can sustain employment. Not to mention the fact that the government is of little to no help to these children and their families. The system is very flawed. Hence, another reason I am fighting to change laws.

If you see a child in a wheelchair, PLEASE do not be afraid to talk to the parent or the child. Get to know them, ask about their experience. I wish people would ask me. So, please don't hesitate to get to know these children, you will not regret it. They are some of the most amazing people you will ever meet.

Technical Definition of Cerebral Palsy:

The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time.

Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age.

The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy.

Savannah's Law Introduced

If passed, it will be a FEDERAL Law but we still need your help here. Find out how you can help.

Congressman Dan Burton [R-IN-05] announced that he has introduced H.R. 5494 known as ‘Savannah’s Law’ to revise the bankruptcy code in order to ensure that an individual can not file bankruptcy in cases where permanent disability results from personal injury. Currently, the bankruptcy code does not make exceptions for cases of permanent disability.

Said Burton, "This bill is designed to make sure that Americans permanently injured because of someone else’s mistake get the care they need."

Burton introduced this legislation responding to the concerns of his constituent Sheri Reece and her daughter Savannah. In 2003, Sheri was in a terrible automobile accident while she was pregnant with Savannah. Sheri suffered multiple injuries, but unborn Savannah suffered severe brain damage.

Savannah, now 4 years old, is unable to sit, stand, walk, dress or feed herself and requires around the clock care. Sheri was offered a settlement by the insurance company which was severely insufficient to provide Savannah the care she requires and prohibits any further legal action. If the Reece family declines the settlement and moves forward with a lawsuit, the federal bankruptcy court can discharge any judgment she might get from the state civil courts and Savannah would again be denied the necessary care.

Concluded Burton, "I was very upset when I heard the story of the Reece family. The individual that caused this wreck has caused irreparable harm to an entire family. It is important that our laws protect those unfortunate victims of personal injury that results in permanent disability."

Contact your senator(s) here

Contact info for governors, congressmen and senators for all 50 states including fax numbers

For Savannah's Sake

Tuesday, December 2, 2008

SAVANNAH'S STORY /Blogging

2 comments:

Our Story

About Ms. Savannah

What is Cerebral Palsy?

Savannah's Law Introduced

United Cerebral Palsy News

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