Friday, March 18, 2011

Cerebral Palsy Awareness Month

March is Cerebral Palsy Awareness Month. That's right. There is such a thing. I've been thinking about this a lot the past couple weeks. I wanted to post something right away -- to make people...well...aware. But, it just never happened. Too many other thoughts on my mind.

And honestly, I've never really associated Samantha with Cerebral Palsy (CP). I know she has it, but it's so secondary to who she is. If I'm going to label her with a diagnosis of any kind, it's Chronic Sweetness and Lovable-ness (CSL as it's also known around these parts).

I remember one day reading a report from her neurologist. Written on the paper, he mentioned cerebral palsy. I was so worried. I knew that name, but I had no idea what it meant. At our next visit, I wearily asked him about it. He informed me that Cerebral Palsy is an umbrella diagnosis. It's a diagnosis that really just explains a group of symptoms.

Samantha has microcephaly -- the jury's out on what her actual diagnosis is, but for now it's the same as what it was the day we met with the geneticist at Primary Children's Medical Center. For now, Samantha has Primary Autosomal Recessive Microcephaly. I have just spent a good 45 minutes scanning different articles, looking for something that would better explain her diagnosis, but unfortunately, they just left me depressed. So, I won't share that annoying stuff. BUT, what I do know is that we were told upon her birth, due to her small brain size, she wouldn't amount to much. And what we DO know that she is very much MUCH. She's more MUCH than most I know -- and they have a "normal" brain. I'm getting off track here...back to CP...

So, Samantha has a group of symptoms including high and tight muscle tone and jerky movements. It's the way she moves that classifies her as Spastic Quadriplegia Cerebral Palsy with Ataxia. So, what the heck does that mean? It means her movements are spastic (jerky and sharp), it affects all 4 limbs, and she has balance issues. All of this is true.

As I talked with Samantha's physical therapist today, who just finished a very intense course with Billi Cusick (creator of the TheraTog and an internationally known pediatric physical therapist who specializes in cerebral palsy and other neuromotor deficits), she told me about some of the things she learned the past week. I have no references for the information I am about to share.

1. Billi Cusick eats, breaths, and sleeps pediatric physical therapy. I don't know. We'd have to ask her ourselves.

2. Billi Cusick is intense -- in a good learning-a-lot way.

3. Recent research shows that CP, though the diagnosis is because of mobility problems, the real problem is a sensory problem! Whhhat?! This is exactly what we've been doing with Samantha! Sensory craziness. Glen Doman said this in the 1960s, and now research is catching up I suppose. So, she continued, it's important to have them on their feet, on the ground, trying to move even if we think they can't. They need as much sensory input as they can get. That will help the central nervous system and that, in turn, will help with the symptoms -- mobility, muscle, etc. I was very excited to hear this, and she got really excited when I told her more about our therapy. "Isn't it good to hear that there's some stuff backing up what you're doing and the progress Sammy's making?!" she asks. Um, yeeeaaah. 

Very interesting stuff -- if I do say so myself. And I do. My thoughts are wandering. Here was my original point when I started (for heaven's sake Jenny! sheesh):

Things change everyday. Research and funding and blah blah blah changes how we all see things. But it's also WHO we interact with that changes us. When I saw Cerebral Palsy on Samantha's paper, I was so worried. But you know, it doesn't change who she is. She's still my little Sammy and she's adorable and kind and I could just tickle her all day long to hear that laugh. But, knowing she has cerebral palsy -- and microcephaly and epilepsy -- and knowing kinda what that means has deepened my love and respect for her a little. She's one tough cookie. I feel gratitude to have her in our home. And I have such gratitude for those other families that help me feel like we're not so alone in this journey.

So, for all you CP fighters and heroes out there...this month is for you.  I give you all my love and respect.

1 comment:

  1. Awesome, Jenny! I love your dx for Sammy! Btw I am working on Faith's story still, don't think I have fallen off the earth! Hugs friend!



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