My Family

My Family

Wednesday, September 25, 2013

AFO's, Cheetos, and Big Macks

Wow!  It has been quite a week!  And we are only on Wednesday.  Last week I was kind of feeling a little bogged down.  It happens.  Life gets busy and sometimes you just want off the merry go round. Plus Cary Lynn and I were sick with that awful bug that is going around.  But the bug has passed for the most part and we are back to normal and moving through.

The last post I talked about our communication board.  Cary Lynn has been trying it out.  There is an upside and downside to it.  The upside is now she gets to make some basic choices and so far every time I have used it she has made a preferred choice.  I have also found out that I am raising a tomboy because every time I put the ball on the board no matter what the other choice is she always wants to pay ball.  I don't know whether to be thrilled that she has preferred toys or to be upset because I was really hoping for a dolly loving tea party playing little girl.  Sigh.  I guess I will just have to go find someone else to play dollies with:).

The downside is there is only so much Velcro in the universe and objects to put on the board.  Say Cary wants more or is finished with something.  That's a little hard to stick on an object board.  So we have limitations.  That is where the big mack comes in.  And no, I'm not talking about the golden arches.  I'm talking about a switch.  One of these:

We tried sign language with Cary Lynn and she does have a few signs down, but Cerebral Palsy has robbed her of the ability to have really fluent hand movement, plus limited vision makes it harder as well.  So we needed a new solution.  On this switch you can record things.  We recorded "I want more".  So when she wants more of something we have her press the switch.  This gives Cary Lynn a voice and empowers her.  It has been wonderful:).  I have never been happier to be interrupted with I want more.  We'll see how long that lasts:).

In other news we have been making progress putting weight on our legs.  I wish I had a picture of Cary Lynn while she is practicing standing but I am the one supporting her so I don't.  But I have a picture of what helps her out.

I have to admit that when her AFOs first came home I used every excuse not to put them on her.  I thought lets just stick a huge handicapped sign on her with blinking lights.  But lately I have come to realize that it really doesn't matter what others think.  My child NEEDS these.  They support her legs, giving her strength to bear weight.  These are the first of many that she will wear.  So the sooner I suck it up and deal with it the better she will be.  So we wear them.

Cary Lynn is also learning how to chew.  I know not really exciting for those of us who have mastered this years ago, but for her a milestone.  Back when we got her the GI's first sentence to me was, "Ready for that G-Tube?".  I told him where to stick it and that Cary Lynn would eat just like we do thank you very much.  He was doubtful and sometimes so was I, but now she is learning to chew food.  It happens very slowly, but it is happening.  Today at feeding clinic she chewed a Cheetos corn puff thing.  And a cookie.  So she is trying hard.

As we get closer to her second birthday I just can't get over how much she has changed.  From a child that by all accounts from her medical records say she shouldn't have lived she continues to defy and beat odds every day.  My daughter is amazing, stubborn, and wonderful.  I wouldn't have her any other way.

1 comment:

  1. Their stubbornness is what gets them so far, I'm convinced :) And you are right about the AFO's being the first of many - it's crazy to see how tiny Alex's used to be at 2 compared to them now at almost 12 :) Very exciting about the switch!