All About CP

Today, March 25th, is National Cerebral Palsy Awareness Day. The entire month of March is actually Cerebral Palsy Awareness MONTH. I wasn't even aware of this until recently! It should be easy for me to remember--I've always loved March (it's my birthday month), and now I have one more reason to be fond of it. 

I had another short post I was going to write tonight (about Curtis and the process of getting his leg casted for his new brace), but then I stumbled on this great post over at one of my favorite blogs--Love That Max. I thought I'd do something similar, but I'll include a little more info about Curtis. And I'll try to keep it short! If you have the time, read her info, though--it's awesome. She has a great blog in general, so if you're a parent of a kid with special needs, I think she merits a follow on FB. 

I think that, in general, people know very little about cerebral palsy. Most people are shocked when I tell them that Curtis has CP. I was shocked when I was told Curtis had CP. Learning more about it is a good thing. I try to explain it to people on the fly, but I don't do a very good job. I'm still learning a lot about it, too. What you read below will be much better info (said info gathered from various sources around the fabulous World Wide Web)... 

• Cerebral Palsy (CP) refers to any number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and the muscle coordination necessary to maintain balance and posture. 
• CP is not a disease and it's not genetic (can't be passed from parent to child). 
• CP is caused by damage to one or more specific areas of the brain, which usually occurs during fetal development, before, during, or shortly after birth, or during infancy. Curtis' CP is the result of his brain malformations--cortical dysplasia and polymicrogyria. Both were present at birth. The CP wasn't diagnosed until several months after birth.
• 75% of people with CP also have one or more developmental disability, including epilepsy, intellecutal disability, autism, visual impairment, and/or blindness
• The CDC has released information indicating that CP is increasingly prevalent and that about 1 in 278 children have cerebral palsy (wow!) It is the most common motor disability in childhood.
• There is no cure for CP, but treatment often improves the capabilities of a child with CP (now you know why Curtis spends so much of his free time in therapy--and swimming, which has become a new sort of therapy for him).
• The symptoms of CP vary from person to person. A person with severe CP might need special equipment to walk or might not be able to walk at all. Those with more mild CP might be able to walk, but just need a little extra help (this is the category Curtis would fit in). 
• There are different types of CP, and they are classified based on the type of movement disorder involved:

1. Spastic CP: Most common type of CP (approx. 80% have this type). People with spastic CP have increased muscle tone. This means their muscles are stiff and, as a result, their movements can be awkward. It's usually further described by what part of the body is affected. Spastic diplegia: muscle stiffness mainly in the legs making it difficult to walk. Spastic hemiplegia: affecting only one side of the body--the arm is usually more affected than the leg. Curtis has Left-Sided Spastic Hemiplegia and both his arm and leg are affected, as well as some of the muscles in his face and mouth (hardly noticeable in his sweet face!). Spastic quadriplegia: most severe form of CP, it affects the legs, arms, trunk, and face.  
2. Dyskinetic CP: People with this CP have problems controlling the movement of their hands, arms, feet, and legs. Their muscle tone can change--varying from too tight to too loose. 
3. Ataxic CP: People with ataxic CP have problems with balance and coordination. 
4. Mixed CP: Some people have symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic.  

• Crazy, random new fact I learned today (and no wonder Curtis is always so tired...and why he still naps at almost 6 years old!)--people with CP use three to five times the amount of energy that people without CP do when they walk and move. 

OK, I could go on and on. I promised I'd keep it short. I think I gave you your fill of cerebral palsy info for the day. 

Before I had Curtis, the idea of cerebral palsy used to freak me out. When they first told me Curtis had CP, I was completely freaked out! But now, on CP Awareness Day, I don't feel afraid. I am more educated. I have Curtis here with me, showing me what can be achieved. I feel hopeful. Curtis has a lot he needs to work on (geez, don't we all?). I can tell you that we won't stop working. It's what we do. Because Curtis--he's worth working hard for...today and every day.

Brace Yourself

Is it March already? I guess so.
I guess I kind of suck at this blogging thing. I usually think about posting in the middle of the day, when I'm away from the computer, out driving the kids to one of their after-school activities--and the next chance I get to actually sit and write is around 10:30pm, when all I want to do is crawl into bed and sleep. I don't see my days getting any less busy in the near future, but I will try to keep the updates coming.

Let me start by saying that 2013 ended well. We had a great Christmas with family and a fun New Year's Eve celebration with friends. We spent New Year's Day at the beach with our dog, eating burritos and watching a perfect sunset. Curtis loves the beach. And he loves burritos. If he cared at all about New Year's, I'm pretty sure he'd think it was the best ever.

We started January 2014 off with our 6-month recall visits at Rady Children's to see the orthopedist and the rehabilitation specialist. 

 

It's nice that they schedule the appointments back-to-back for us (and they are in the same room so we literally don't need to go anywhere between the two appointments), but the appointments still tend to be long. You can count on at least two hours to see the two doctors. I try to plan accordingly for these visits, but it just never works out. Curtis get bored and tired and upset. Generally, I don't let him play with an iPad or my phone, because when the doctors come in and ask him questions or want him to do something, he doesn't want to participate--or he throws a fit when I take the device away (we're still working on iPad etiquette...it's taking a long, long while). That leaves us with coloring, singing, talking, and whatever...for a long time. It gets boring (for him, at least) fast. Real fast.

 

drawing a bug or a monster--something with multiple legs

        

This appointment was no exception. Curtis was not happy from the get-go. He just wanted out of there. I think he just knows by now that he is going to be stuck in that room for 2 hours and he's just like, "no." Especially since there are residents that roll through and do the same things as the doctors and ask the same questions over and over. It gets old. But it's necessary and I understand that. He, unfortunately, doesn't.

Not a happy camper

 

In any case, after cruising up and down the hall several times to examine how he walks and much discussion with both doctors, it was decided that Curtis needed a brace for his left leg. It's going to be something that helps prevent his toe from dropping, which is something he's had trouble with in the past and is something he's starting to have a little trouble with again. I noticed it a few weeks before the appointment and mentioned it to the doctors. Once they had him take a walk down the hall, they noticed the toe drop right away and said that it wasn't too bad, but it was definitely something we should take care of. They did, however, sort of leave the final decision up to me. To brace or not to brace? In the end, I agreed that he should have it--he's taken some really hard falls in the past and I feel like if there's anything I can do to prevent that, I am all for it. He won't have to wear it all the time, but on days when he is walking a lot or when he's playing sports, it will be a good idea for him to have it on.  

 By the way--check it out! Little dude had his first soccer season!!

I won't deny that I instantly questioned my decision. Does he really need this thing or not? UGH! 

So the appointment was done and they sent us off...we will go back in 6 months for another recall visit...

And then Curtis and I cruised around the grounds of Rady Children's (it's kind of a cool place and he wanted to play a little)...

His favorite--the "Incredible Circus" ball machine

 

Frog King--he'll only get this close

Aargh Matey--captain of the ship!

And then, folks...something happened. A sign from above, if you will. Curtis tripped over his own feet. He bumped his head. He cried. He got a red mark on his forehead. And, with that, my previous concerns went away. I no longer question my decision about the brace. It sucks that he has to have it, no doubt, but he needs it. No more boo-boos like this, he's had too many of them in his lifetime :(

Not the best photo, but all up near his hairline it was red

What a busy morning we had...

I'll be sure to show off the new foot gear once it's made. We go in this Friday to get a casting made of his foot/leg since the brace is custom made for him. I'm not quite sure how long it takes after that. 

In other news, a few weeks back I registered Curtis for KINDERGARTEN! Holy moly! Excited, nervous, freaking out, happy, scared, (did I mention FREAKING OUT?). Yeah, it's crazy to think that he's almost there. Very crazy. I'm excited for him.