Wednesday, October 28, 2009


Well, this week has certainly been quite eventful! I've been showing off all I can do, so hopefully more things will start moving into the right direction.

On Monday, had to visit my pediatrician to get my flu shot. The checkup was perfect, as I've been feeling well and I've been doing great. I didn't even felt the actual shot. I need to come back in a month, the day after Thanksgiving, to get a second Flu shot, and the Sinagis shot. The EMTs crew were the "fun" ones, so the whole trip both going and coming back was a smooth, funny, happy journey. I didn't have any side effects, no fever at all. Knocking on wood...

On Tuesday we had the long trip to Helen Hayes Rehab Center in NY. Now that was a long drive! I slept for a while, so when we arrived there I woke up ready for action. We didn't have to wait long, as there happened to be a vendor and he show us his demo for the Erica communication system. It was amazing to see how fast the system calibrated my eyes, as I have nystagmus (my eyes shake from time to time due to muscle weakness, but it is a faint shake). I was actually following where they were asking me to follow with my eyes, and so I ended up doing ok with this system. The SpeechTherapist for Adapted Technology arrived, and so she moved forward to trying out other communication devices. So, we moved on to Tobii.

I tried the MyTobiiP10 system. Ha! Everyone was very surprised at the speed that my eyes calibrated, plus the actual calibration is very easy. The whole system's navigation is VERY intuitive for kids. I got the hang of what I had to do quite fast. The therapist put a game of Whack-a-Mole and I kept wacking them as if there were no tomorrow! Now THAT was fun! She put a game of selecting animals to hear the sounds, and although they don't have movement I figured out that the big green button was to go back to all the animals to select the one I wanted. This was by far the best experience between them all! Mommy, daddy and NurseMasheila were too excited to see that yes I did understand what to do, and that yes I can actually follow directions. The secret is out: All this time I've been stubborn and demanding... (well, isn't that a typical toddler attitude?) I was actually complaining whenever someone changed the screens, I wanted to keep playing with specific games... There is another Tobii system that the therapist wants me to try, the Tobii C12, which they didn't have at the center, so they will call up the vendor and set a date somewhere in November. So with that settled, we moved on to the Dynavox.

The Dynavox system gave us some trouble for calibration as it needed to be position in just the right way for it to do the job (unlike Erica and Tobii that found the eyes pretty fast). This took a while, which instantly made us feel not quite comfortable about it. The navigation and layout look as a computer, good for us but not intuitive and easy for a small kid like me when compared to the other two. The system was a bit sluggish, and I couldn't get to play around with it. Maybe I'll give it another try when we go back... but so far I think Tobii the best out of all the bunch. Now Mommy and Daddy need to go in deep with each systems specifications... but that is another story.

So, it seems odd that my eyes could not be calibrated by the LC EyeGaze system. Perhaps there were other external factors, maybe the light was not enough? Or the positioning? Maybe we could explore this one again, just to be certain that we will make the right choice. One never knows, so I cannot "marry" with the Tobii idea.

Today PTEllen passed by, and Mommy and Daddy drilled her about the wheelchair and stander woes. They all dissected every inch of the wheelchair (mentally of course) and figured out what could be done to make it work. We will all wait until the horseshoe-shaped neck support, new AFOs, and the knee support arrive to actually see if that is all that is needed. The guy from Millenium was here as well, and gave some input daring to ask the questions we had thought of (and no one really answers). That was fun too. Also, I got a big box from my other granny with lots of new books! And most of them are in English and Spanish! I foresee long hours of mental drilling... My family is driving me insane with all this educational fun! Gosh, everything has to do with education? Come on! And then they wonder why my head is so heavy!

Well... My nightly treatment must take place, so now... to see what the rest of the week will come up with. Ah, the journey never ends!


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