Understanding Cerebral Palsy

Since this is a journal for our family, I wanted to keep a short journal of Damon's conditions and might make understanding Damon a little bit easier.

Understanding Cerebral Palsy

Cerebral Palsy (CP) is a broad term that is used to describe a number of conditions in which are all chronic. Cerebral refers to the brain and Palsy refers to a condition affecting movement or posture. These are caused in the brain while still in the womb during pregnancy or early on in childhood where there is damage to one or more parts of the brain.

CP usually develops between the age of 2-3 and is a non-progressive brain disorder. About 8,000 infants and about 1500 preschoolers each year. Between 35-50% of people have seizure disorders and some level of retardation.

Below is a picture of the different types of CP and Damon has a little bit of all of these but mainly the tense muscles called tone. Normally the brain tells us what to do and when to do it.

Muscle tone refers to the amount of resistance or tension to movement in a muscle. Most people don't know what tone does for our body or have heard what it does for our body. Before I had Damon and before we knew his diagnosis, I had never heard of this word. It is what keeps our bodies in position. For example, to brush our teeth and bend our arm, we must increase our tone in our biceps on the front of our arm at the same time we are reducing tone on the biceps in the back of your arms. So all tone must be balanced to make smooth transitions ins everyday life, which in turn lead to characteristics of CP:

* Muscle Spasms
* Muscle tightness

* Involuntary movements or twitches

* Difficulty walking

* Sensory disorders

* Difficulty speaking

*Seizures

Each case of CP is different and varies from one person to the other, it is characterized in three different groups. Spastic, Athetoid, and Ataxic. (all pictured above)

A person can be affected more severe or less severe and depends on which part of the brain is affected and how much is affected. Many Dr's and physicians are involved in making the most for our kids. Dr's such ad orthopedists, who handle things such as the joints and bones, developmental pediatricians, neurologists, and therapists.

From Alise's point of View

*** From my point of view, having a child with a disability is no different then having a normal child. Yes, it is a little bit more work because of the appointments and therapies, but what else have i got to fill my time? It definitely is a life changing opportunity but I can't see my life any different. Its possible this is because I know no different. Since Damon was 2 months old, this is all I know.

I remember getting that phone call from my DR after we went in for a routine checkup at two months and realizing his head had not grown much. That was the first time I heard the word Microcephaly (another post on this) and where life began for us. After a CAT scan that showed a decrease in white matter and a still open soft spot, in which they were worried maybe he had a prematurely closed soft spot because you could not feel it. That phone call was a change. I remember so clearly living at Juan's uncles house in a bedroom in the back, and not being able to really speak to them because they didn't speak much English. But it was this day that I fell on the ground crying next to the bed and just crying because I didn't know what to say, what to think. I called Juan who didn't seem to concerned, then called me mom to look up everything she could about this so called microcephaly. All it means in small head so that didn't tell us much. She just said I'm sorry I don't think you know what to say at this moment. I also remember my dad being in some what denial I think because he kept telling me, his head doesn't look small, there isn't anything wrong with him, but I knew that things were all about to change. I often thought about it and tears would well up in my eyes until I could get my mind off of it. I never did think, why me as in what did I do to deserve this, but I always wonder why I was chosen to be his mom. Throughout this experience we have done more things that I thought I would never be able to do or ever knew about really. From CT scans, MRI's surgeries for a hernia at 2 months, therapies at an early age continued, tendon release, hip displasia, fitted for Ankle Foot Orthotics (AFO's) multiple times, going through the process of ordering equipment, figuring out different medications to help with spasticity, seizures, reflux, sleeping issues, and problems. Our world has definitely been shook and you wonder everyday if your doing all that you can to help him live a better life. No I don't and that's horrible to say. But it's real life and you just go with it.