Tuesday, April 30, 2013

Hand Washing and Botox

Allie had her semi-annual IFSP (Individualized Family Service Plan) discussion last week.  The only notable change is that we are going to change our in-home OT to focus on Allie's normal life skills, such as dressing herself and being able to pump her own soap when she washes her hands.  We're also getting a speech and vision evaluation.  A speech with just be another update but with a new speech pathologist who can come to our home and be around our allergy-plaguing cats.  The vision evaluation is to see if there are things we can do to remind Allie to look to the right in case her potential visual field cut is getting in the way.

Today was Allie's first OT session since the new IFSP and I was thrilled that we jumped right into the new plans.  I am happy to report that after one OT session and about 500 hand washing sessions throughout the day, Allie is an independent soap pumper!  It is amazing how much I never thought about how integral two-handed operations are in daily life.  Allie has opened my eyes in so many ways.

Look at that soap! 
I can't wait to do this at school!

After much debate, Jonathan and I may be changing our anti-Botox stance.  I had a long discussion with her Children's OT, who has been a strong proponent of getting a little Botox in Righty.  The OT and I talked all about what we would need to do if we decided to do Botox to make the most out of it.  I said that I was concerned that she would get too much and would lose the functionally that she has been working so hard to gain.  The OT said that Righty would definitely seem weak at first because we are taking away the high tone muscle that has been controlling everything and we would be forcing the rest of her muscles to build enough strength to make up for it.  We would have to do a lot of therapy.  We would have to push her to work hard in a new way.  We would have to hope that Allie doesn't have any of the side effects that I'm afraid of.

There was a moment today that may have swayed me in the Botox debate more than I would like to admit.  Allie and I were in a store and I was walking towards the cash register with Allie about 10 feet behind me happily carrying a brochure in each hand.  The cashier was watching us walk up and she rather loudly said "What's wrong with her leg?"  I was a little shocked and naively asked "What do you mean?"  She said "She's all like this..." and she limped around the cash register area and a couple of the other nearby customers stopped to observe.  I  matter-of-factly and with a smile told her that Allie had cerebral palsy because she had a stroke.  The woman just said "OK" and we rang up our stuff and left.  I don't think the woman meant it to be mean; I think she just had no idea.  Still, I think we owe it to Allie to at least try to help lessen the limp if we can so that she doesn't have to deal with quite so many ignorant people later.

We'll be arranging an appointment with her two PM&R doctors and maybe her PT to discuss the possibility of maybe doing Botox on Allie's calf and hand.


  1. Maybe the cashier didn't mean to be "mean", but she was. Maybe Allie does need to learn to deal with insensitive, uninformed people. But if this cashier ever says anything like that again, I'm going to want to meet her personally. You did a remarkable job of staying calm. I'm not CALM!!!

  2. Oh, and great for Allie for learning to use Righty in so many ways. What a girl!!