Wednesday, September 11, 2013


Post-appointment Allie

Allie had a botox evaluation today.  We're on.

She was so amazing at the appointment. I had to take her out of school after lunch and she didn't pitch a fit about leaving.  We got down to the Children's Hospital and she was sweet as could be as we checked in, waited in the room for a half hour, and finally saw the new fellow who works with Allie's doctor.  Allie really liked the fellow and happily did all the stretches that she wanted her to do.  We did a couple of laps around the physical medicine department so the doctor could get a good view of Allie'a gait.

After an hour and a half exam, Allie's doctor and fellow recommended that she get botox in her right hand, forearm, shoulder, and calf.  They think that she is a great candidate and are very hopeful that the botox will give her a chance to strengthen some muscles that are being overshadowed by her current tightness.

The doctors commented that Allie's leg tightness seems like dystonia, which gets tight when she tries to use it but is loose when she is relaxed. Her arm, however, is tight much of the time, making it more characteristic of spasticity.  None of this matters except that I still have a hard time figuring out what words to use at any given time.

The procedure sounds interesting. Allie will be put under general anesthesia for a half hour and they will use an electrified needle to figure out exactly where the botox needs to go. They use the electrical stimulation to activate individual muscles and then inject the botox into the muscles that are overly tight.

We're scheduled for October 8.  We were told that it will take 3 days for the botox to activate, 3 weeks for it to reach its peak, and the results will last for about 3 months. We will have a therapy adjustment during this time with an additional OT and PT session per week.  My only nervousness comes from the fact that I'll be out of town Oct 12-15 for work and that will be right around when the botox starts kicking in. Poor Jonathan!

I have been somewhat anti-botox since her doctors first started talking about it a year and a half ago.  I've finally gotten excited about it and I'm looking forward to seeing what Allie will be able to do with it. It will be nice for her not to have to pull her right thumb out and tell it to "open" when she wants to use righty.

Allie fell asleep on the way home from the appointment and she was so good that I didn't have the heart to wake her.  We both sat in the car for an hour until my boredom exceeded her cuteness.  Jonathan came home from work with a balloon for her as a reward for being so good.  She was thrilled.

Aside from being an awesome kid today at the appointment, she had great language day too.  She told Jonathan all about the appointment by listing all the things she did during it.  I have never seen her accurately recount an experience before.  It was very cool. I also heard her pluralize several things (like "two ducks" instead of "two duck", and "two shoes" instead of "two shoe").  And, her new word of the day is "broken".  She told me that her cracked cup was broken and patted me on the shoulder and informed me that my computer was broken because I turned it off last night.  As soon as the apple popped up on the screen she said "Not broken!  Apple.  Yummy!"

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