Jocelyn happens to have both a brain injury (ie from massive hemorrhaging) and developmental disabilities.
For this blog, I wanted to focus on brain injury awareness.
How many of you personally know someone that has had a brain injury? How many of you personally live with a brain injury?
Sometimes its hard to tell, some manage themselves just fine, and yet for others, they are completely dependent for the remainder of their lives.
No one is safe from sustaining a brain injury - NO ONE!
If you know us and our family, then you already know that our most treasured possession ... our sweet princess Jocelyn ... acquired a nasty brain injury after birth. Some have what is called a "traumatic brain injury" or TBI.
I will attempt to not utterly bore you to tears, but when you have someone so close and so precious to you that suffers from brain damage, you want others to be aware of this life altering injury, to increase understanding and support.
After Jocelyn was born, she went without the necessary oxygen that her body required and her brain hemorrhaged ... and it hemorrhaged BAD. After everything was said and done, she sustained grade IV bleeds on both sides of her brain which damaged so many precious parts and has affected her ability to see, hear, talk and eat. Also, her brain injury has affected the muscles of her body which hinders her ability to perform tasks such as moving and manipulating things.
This is the reason why Jocelyn requires a wheelchair, its why she has spastic muscles and continuously requires Botox injections, why she has to wear special boots on her feet, why she has problems with sleeping/vomiting/expressing herself, why we are constantly going to therapy as well as doing it at home, why one day soon she will need bilateral hip replacements, why we have a g-tube, why we go to appointment after appointment after appointment ...
Because of Jocelyn's acquired brain injury, this is the reason she has a shunt in her brain as the severity of the hemorrhaging caused structural damage preventing the cerebral spinal fluid (CSF) to drain from her ventricles appropriately.
In our particular case, when ALL this happened -- what do you get?
CEREBRAL PALSY
- And it affects our WHOLE family! -
You don't have to look hard to see that a brain insult/injury can change your life instantly without any warning. A brain injury can affect thinking, language, learning, emotions, behavior, sensation, mobility ... the list is long and endless it seems. How do I know this? Because Jocelyn is affected in ALL these areas.Generally, there are long-term consequences of an acquired brain injury and/or a TBI. The CDC & Prevention estimate over 5 million Americans alone have a long-term or lifelong need for help to perform activities of daily living as a direct result of a TBI.
To help spread awareness, I thought I would provide examples of an ABI & TBI.
An Acquired Brain Injury (ABI), from traumatic and non traumatic causes, is a leading cause of disability worldwide.
Examples of an Acquired Brain Injury:
Examples of an Acquired Brain Injury:
- Stroke
- Brain Tumor
- Encephalitis
- Hypoxia
- Brain Hemorrhage
- Traumatic Brain Injury
- Falls
- Vehicle Accidents
- Assaults or being struck in the head
- Blasts (like what the military experience during war zones)
A brain injury can HAPPEN TO A.N.Y.O.N.E!!!
Brain injuries do not always present the same in each person -- almost never are there two people with the same injury that demonstrate the exact same problems -- they can be similar, but never are any two brain injuries exactly alike. You want to talk about frustrating ... this is frustrating for the injuired individual, the family and health professionals. Why? Because there is no special recipe, no particular procedure, treatment, etc that works for each person. Sometimes there seems to be no rhyme or reason to why a treatment or procedure works for one, and doesn't work for another.
Brain injuries can range from levels that are mild to severe. Jocelyn had a severe brain injury which manifested into moderate to severe cerebral palsy.
Some stats of those affected by Acquired Brain Injuries:
- Stroke: 795,000
- Tumor: 64,530
- Aneurysm: 27,000
- Encephalitis: 20,000
- Multiple Sclerosis: 10,400
- Anoxic/Hypoxic: number unknown
I was also curious about TBI statistics, did a little research and wanted to share.
Of the 1.7 million people who sustain a TBI each year in the United States alone (MILLION ... so our daughter is by far not the only one affected ... and 475,000 of these cases are in children) the following occurs:
- 52,000 DIE
- 275,000 are hospitalized and
- 1.365 million are treated and released from the ER
- 3.1 million will live with a life-long disability as a direct result of a TBI
- Post acute care: $850-$2,500/day
- Average hospital-based acute rehab: $8,000/day
- Therapy/Treatment Programs (ie 4hrs of therapy ... we do this easily): $600-$1,000/day or week
- And we aren't even getting to any secondary surgeries like Jocelyn has had (ie eyes, gtube, soon-to-be hips, etc)
- CBC & Prevention estimate direct medical cost & indirect costs (ie loss productivity, etc): $76.3 billion ... BILLION ... each YEAR!
Living with a brain injury, caring for person with a a brain injury, is no joke!
I pray all of us, and those we love, never experience this often life-altering disability.
What we can all do?
Learn and talk about it,
love and help each other,
be sensitive and encouraging,
do not judge,
to not discriminate
...
HELP when and wherever you can!
Thank you!!! I spend an enormous amount of time trying to explain to people that CP is caused ny a brain injury. It is not a disease or an illness or something that can be caught or cured. Its an uphill battle on top of everything else I and those in the same leaky boat I am in, including you and J and her dad , have to do just to get through the day. It is what it but the more of us shouting this message from the hilltops the better off we will all be!!
ReplyDeleteLaura