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!


Monday, October 26, 2009


Yup, the secret is out... Now no one has any doubts about it... I'm singing and talking to my favorite friends, especially the WonderPets. Gosh, you should have seen Mommy and Daddy yesterday when the caught me offguard... I was minding my own business in the living room, enjoying my wonder people, and then I see two figures peeking at me from the kitchen... Kodak moment! Yup... no strong words are uttered, but I was repeating the songs and the dialogue and reacting to my show uttering the sounds that are the unmistakable equivalent. The sound that mimics the word "teamwork" leaves nothing to the imagination. I ignored my parents and kept on with the talking and singing for the rest of the afternoon... but I know they were very surprised, especially because I kept doing it... LOL It's been more than three days that I do it loud and clear so they finally realize that yes, it is true, I understand... I just prefer to have everyone guessing... I love the drama.

Besides this, I've been getting stuff so I am ready for Winter. The North Ward sent me some basics that I really needed, and Mommy complimented it with some stuff she got thanks to the Colombus Day specials. I am very happy with everything. I even got the stickers for the ceiling, so I can exercise my gaze as suggested by the OT. God definitively has blessed me with just the right amount of minions so I can really live.

Last week was non-dramatic, and I just kept chillin in my wagon and in the stander. On Friday my wheelchair arrived again, so now we are in the trial process to see just how useful and safe it is. This next week will be full of appointments and things to do... I will get my flu shot tomorrow, and then on Tuesday I will go to Helen Hayes to see the Speech Therapist over there (and that is a long travel). And then we will have the Halloween weekend celebration... I keep rollin'and i ain't stoppin'. But for now, enjoy this mini scrapbook of October:

I can't say my life is boring! And now I even have one little visitor that every now and then shows up and makes things interesting. I also discovered the VeggieTales, and I am starting to get into them... Hey, gotta give my minions a small break from the WonderPets! (although secretly I keep watching when everyone sleeps, shhhhh... that's a secret!). And I also got the news that my Godmother turned a year older... Hey! Where's the cake?! Come on! Birthday without cake is like a house without me! Send in the cake! (Mommy will liquify it in the blender so I can get it in my tummy, no problem). And to my Godfather: Have a safe trip back to Macondo, USA!

GOD: Thank you for keeping me safe, for the daily blessings that you send me, and for so many people that love me so much! Help those who need you, heal all those kids that got sick with that swine flu and other illnesses... Place Your hands over them and carry them, and make them feel your Love. Amen.


Friday, October 9, 2009


Wow! I've been quite a busy bee for the last two weeks! It’s been great. I’m getting all the attention I need, and there seems to be progress coming my way. A new OT joined the team and so far so good. My APTTracy visited me and brought a clock scanner that I should use with my switch. I get it, now I have to work on actually been able to activate the switch… We’ll get to that.

The wheelchair blues has a new episode, but at least things should move in a positive way. The PT realized that the PO said the wheelchair must recline (go flat), so they ordered what needs to be added so the wheelchair can do it. Now we are waiting for it to arrive, so we send the wheelchair back to its headquarters so it is modified to what I need… I hope that this doesn’t take too long. Being in bed or just in the stander is not funny. I’ve been using my wagon again, but I have a snug fit on it. Creativity always helps me, but some things are just a necessity.

Went for checkup to see my Pediatrician, and she was quite happy everything is well with me. She prescribed a visit to an endocrinologist which is a work in progress. Later on I had an appointment with my Physician, who prescribed new AFOs, a horseshoe neck support, and knee support for use when I’m in the stander.

This week I went to Helen Hayes Rehab Center on Tuesday. It was a rushed date, as we got the notice on Monday’s afternoon… Mommy and Daddy made sure I wouldn’t miss that appointment and they delivered. So, I went in the ambulance with NurseMasheila while NursePeronette followed in her truck with my equipment. It was funny, when we got to the place the lady was actually happy to see so much people (I guess they are used to only a few… And you know me! I have quite an entourage! ). There were some technical issues as we had to wait for medical approval for up to two hours… but the AssistiveTechOT decided to at least give us some tips while we waited. In the end we got a bit more as the approval arrived and so he got into showing other assistive alternatives live. We checked various scanner programs in the computer and got some direction to look into (SpeakingDynamically’s Boardmaker, Intellitools Click-it for creating hot spots, and ZACbrowser for alternatives that can be used with them as they would work with hot spots). We also checked a router-scanner for allowing me to turn on/off tv or dvd, helping me make my own choices. And finally we checked the alternative of using a proximity switch so I can actually get results right away (diminishing frustration). I’ve got to come back at the end of month for a date with the AssistiveTech/PT so we get into more communication options. This is VERY exciting!

I got a visit from PTEllen, who made me whip it all from head to toe. After she left I was so beat I took a nice nap to recharge my energy. I also got a visit from OTMaya, who discussed some therapy alternatives with Mommy and Daddy including the use of TheraPutty (they use the Play-doh but boy is it stinky! I am glad they ordered the putty, no smelly stuff!), getting a prescription for a Benik hand resting splint so I keep my natural curves while I sleep (I’ve been keeping my index finger too hyperextended without realizing it), getting a prescription for a thumb spica so my thumb is well supported so I can click without error (finally all of them see I do understand the command to click, but I don’t have the finger support to do it), doing some rice texture exercises (placing rice and beans in a sock and placing my arm inside so I feel different tactile stimulus), and reinforcing the flashlight exercise so I keep strengthening my eye gaze following ability (Kyonene, sigue la bolita…). She also suggested a specialty ophthalmologist visit. OMG! Now these people are putting me every little centimeter of me to work! But you know what? I’m loving it!

So… Coming up is a mandatory appointment to get my Flu shots, and going back to Helen Hayes for more assessment. Also follow up with endocrinologist and an ophtalmologist (specialized on assistive technologies), with DrBach, with the SMA Clinic… And more therapies… Gosh, the schedule of a diva is always too much! I hope Mommy and Daddy can keep up with it! And don’t forget Halloween! It is just around the corner! I hope I don’t get lost in Wonderland following the busy Hare! And I hope that playing cricket with the Queen doesn’t end in an off with my head! Mommy and Daddy decorated the whole apartment with creepy stuff… There are thick spiderwebs in the living room, and the Easter tree became the Halloween tree! Even the walls are now covered with spiders! Oh, my! Can never say that my home is dull! There is something going on, always. And I would not have it any other way.

God: It has come to my attention that many kids are ending up with the piggy flu. Please, God, take care of them so they heal fast! Give energy and health to their caregivers, so they can do what they must. Special prayers for Sarahi, Ryan, Shira, Stella, Emily, and MJ so they are safe. Thank you God for so many blessings. Every day you take care of me, granting me so many miracles! I acknowledge Your caring breath, and how you take care of Mommy and Daddy and Auntie and Godfather. Thank you because there is always food in our table, we have shelter, and we have each other. Our lives are in Your hands. Amen.