Sunday, June 26, 2011


5 days post-op:

8 days post-op:

The swelling and bruises are mostly gone, but she does have a small knot where the gland was. I don't remember her having that last time, but then again, last time I was so afraid to touch anywhere in that area I might have just not noticed!

Her secretions are definitely less. We still have to suction a lot, but we are getting less out. The problem Charlie has, it doesn't matter how little secretions she has, it all just falls back in her airway. So she's *always* going to struggle, unless we dry her out completely, which is not a good idea. But with LESS secretions she breathes better and has higher O2 sats. I've always hoped to get rid of this damn suction machine but I don't think that's realistic for us. I'm probably going to invest in a hand-powered suction unit so we don't have to drag the big one everywhere. It's also quieter so it'll be nice for restaurants, movies, ect.

Just a pic of Charlie hamming it up:

That's her forced smile for the camera. Until recently I've had to "make" her smile for pictures. Talk to her funny, jiggle her feet, ect. But on a good day now, all you have to do is say "Smile for the camera Charlie!" and she does. But it's kind of goofy looking. LOL

I had a discussion one time with a doctor who was trying to get me to attend the CP clinic at Children's hospital. I flipped through the brochures and paperwork and decided it was geared more towards kids with milder CP. The information was all about getting kids reaching major milestones, like walking, feeding therapy, behavioral issues, ect. It was all therapy, therapy, therapy! Now if you've been reading my blog any length of time you'll know that none of that benefits Charlie. We DO therapy, but our goals are not to get her to sit or walk, or talk, or eat. She has VERY severe CP. These things are not practical goals. Practical goals for Charlie are getting her to communicate yes/no, using her hand to hit a switch, ect. Not to be a downer, but this child is NOT going to be independent, ever. She won't ever eat...and behavioral issues? Are you kidding me? This program obviously did not apply to her.

So when I voiced these concerns the doctor tried to talk me into it. I told her, "Just look at these pictures...all of these kids are high-functioning. They obviously have a certain type of patient in mind for this program". She told me "Well they probably just needed to be able to photograph kids who can smile on command". That pissed me off. So they took the kids with mild CP and used them to advertise their program because they can smile pretty for the camera? That's bullshit.

And I know that for a fact now because we went and did it. It was a complete waste of time and the therapists were talking about all the stuff we "need" to get her doing (sitting, ect). I said, "Hold it right there....Charlie is PERFECT the way she is. She doesn't NEED to do anything but be a happy kid. We've TRIED therapy (LOTS of therapy) with almost no success. She does things when she's damn well ready to, therapy or no therapy, and we celebrate every little success." They backtracked and said "You did therapy?" Yup, sure did...4 sessions a week for 18 months. They ASSumed she was so "behind" because we neglected her therapy. When corrected, they said "Well maybe you just need the right therapists". Aaaaannnnnd....we're done.

I was right and we didn't go back. They want kids they can see consistent improvement from. They don't want kids who are so severe that years of therapy do squat.

But it doesn't matter. My kid can smile pretty for the camera. :-D

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