Monday, March 26, 2012

Cerebral Palsy Awareness Day

 Today is CP awareness day. In our hose we really dont need to be made more aware of CP but I think it is a good opportunity for other to ask questions and understand a little more about CP. So this post is going to be a little fact or fiction about CP. 

Cerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring before, during, or shortly after birth; or during infancy. These disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain's ability to adequately control movement and posture.
"Cerebral" refers to the brain and "palsy" to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. Cerebral palsy is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not "curable" in the accepted sense, training and therapy can help improve function.
There a different types of CP: Spastic diplegia, Spastic cerebral palsy ,Athetoid, or dyskinetic cerebral palsy, Ataxic cerebral palsy, Mixed forms. James' diagnosis is Spastic diaplegic but we believe that he does have more of a mix because he shows some signs of Ataxic CP. James' CP was cause by a stroke that he has in utero. The stroke cause a brain bleed ( PVL) a that cause the damage to his brain thus CP.

Here is a little piece of  CP history that I found interesting.
In the 1860s, an English surgeon named William Little wrote the first medical descriptions of a puzzling disorder that affected children in the first years of life, causing stiff, spastic muscles in their legs and to a lesser degree, their arms. These children had difficulty grasping objects, crawling, and walking. They did not get better as they grew up nor did they become worse. Their condition, which was called Little's disease for many years, is now known as spastic diplegia. It is one of several disorders that affect control of movement due to developmental brain injury and are grouped together under the term cerebral palsy.
Because it seemed that many of these children were born following premature or complicated deliveries, Little suggested their condition resulted from a lack of oxygen during birth. He proposed this oxygen shortage damaged sensitive brain tissues controlling movement. But in 1897, the famous psychiatrist Sigmund Freud disagreed. Noting that children with cerebral palsy often had other problems such as mental retardation, visual disturbances, and seizures, Freud suggested that the disorder might sometimes have roots earlier in life, during the brain's development in the womb. "Difficult birth, in certain cases," he wrote, "is merely a symptom of deeper effects that influence the development of the fetus."
Despite Freud's observation, the belief that birth complications cause most cases of cerebral palsy was widespread among physicians, families, and even medical researchers until very recently. In the 1980s, however, scientists analyzed extensive data from a government study of more than 35,000 births and were surprised to discover that such complications account for only a fraction of cases--probably less than 10 percent. In most cases of cerebral palsy, no cause of the factors explored could be found. These findings from the National Institute of Neurological Disorders and Stroke (NINDS) perinatal study have profoundly altered medical theories about cerebral palsy and have spurred researchers to explore alternative causes. 
As the old saying goes " The more you know" I hope this post was somewhat informational and you come away with a little more understanding of CP. But the MOST important thing that I want people to understand is that CP is just a part of life. It doesn't mean that people should be afraid to care or love kids like James. In fact you might find that they are pretty amazing. 
I get a lot of well meaning comments of sympathy about raising James but I have NEVER thought that raising James was a burden. In fact I am the one that is the lucky one because I get to see God miracles in a physical way everyday. I get to watch a child overcome obstacles that, according to the medical world, he should have never overcome. I am the one that is lucky to have been given James to raise. True, what CP does to James just plain ole' sucks sometimes but it doesn't not define my son. It is just apart of the wonderful and amazing kid that he is. 

Tuesday, March 6, 2012

What is Normal

Normal.....That little word defines us in so many ways doesn't it.  "Lets get back to normal, I don't feel normal, It is just a normal day.....that child isn't normal"  what exactly IS normal anyway. Don't we all set that for our own family. If that is the case then, there shouldn't really be a set standard for "normal" right? Then why do I seek it so much?? Why do I crave normality? When in reality I cant even define it.

There are days when I sit and try to imagine my life as "normal" and for me that means that James doesn't have cerebral palsy. It means that I don't understand medical lingo, or have medical equipment in my home. It means that my calendar is filled with t-ball games instead of doctor appointments. But that isn't what my normal is supposed to look like and that is hard to wrap my head around as James gets older. Now that surgeries ( for now) are past us, I have been searching for that elusive state of normal. I have come to realize that I don't even know what it is supposed to look like for use anymore. We are trying to step back some of James's physical therapy appointments and let him build strength by doing those typical 4 year old activities. The PT quote was "Lets let James be a normal 4 year old for a while" How??  Normal doesn't come with a home program, checklist or follow up appointments to make sure that I am doing it right.

Society says normal is a perfect able body, but what does normal look like for a family that has a 4 year old that has CP due to a intro uterine stroke? I don't have an answer to myself because I am coming to realize that normal isn't on the outside, but instead normal is a state of mind. Normal is feeling ok with spending the day feeding the ducks in the park instead of worrying that James is missing a PT appointment. Normal is watching James play with his toys and not feel the need to keep a running checklist what movements his body is or isn't making. Normal is enjoying the gift of motherhood, instead of feeling like I am failing everyday if I miss a stretch.

So today I am going to do 1 normal thing with James..........well our version of normal :-)