Friday, March 26, 2010


Everyone knows I’ll turn 3 years old in August 17th, so by now things are happening to make the right preparations that such an event brings! Besides the obvious (me turning a year older, which means that I’ve won another battle in the ongoing war against SMA!), here it also means that I will be ready for Pre-K. This is very exciting! I love books and animals and learning, so I’m looking forward to the new things that will come my way! Hopefully that will also mean field trips, I’m a sucker for some fun in the sun.

Mommy and Daddy have been following-up with Helen Hayes Rehab to see if my eye-gaze communication device (the Tobii P-10) gets approved to fulfill my needs. We all know this will open so many doors in matters of my being able to clearly communicate to my people what I want and what I need. Besides this core purpose, with the Tobii I will be able to learn and expand my horizons: What I cannot do with my hands or physically, I’ll be able to do “virtually” through the computer and through Internet. I envision that for my school years, whenever I have to be homebound I will be able to attend via video-conference and actually see my peers! And later on, I may actually attend school or college through online schools, just like Mommy! But I will try to hold my horses… Back to the basics ( I know, I am always dreaming big, but thanks to that is that I am alive!).

My main goals for my PreK will be actually being successful controlling the Tobii both for communication and for basic education. I hope I have no trouble getting it now… Another goal will be successfully controlling my power wheelchair when I finally get it (until we move to an accessible apartment or house, that is on hold. Living in a 2nd floor with no accessibility has been quite a hindrance to some of my life skills goals… but at least I live under a roof, so I’ll stop my whining). Of course, by now I know my colors and shapes but that will also be reinforced too in my new learning quest, along with so many other things that I’m curious about! But I know… I keep getting ahead of myself…

On March 25th, the first Transition from Early Intervention to Special Ed reunion took place. It was just the first of many more reunions to come, and very exciting for Mommy and Daddy. My team met at home (Debby, Pat, Ellen and Maya from Early Intervention) and the special education team was there by phone conference. Although I was in my room, I was carefully monitoring everything they said, sending my faithful nurse to spy for me. The special ed people got a basic background about me from the perspectives of the PT, OT , developmental and of course Mommy and Daddy. Mommy and Daddy expressed that they want me to be able to experience the world and get every opportunity I can to live to my fullest and that they strongly believe that through technology that main goal is completely possible. They want to try my being able to actually go to school, and described my daily routine and the main things I can do. NurseMashaela almost made me cry when she talked about me… The meeting ended in a good note, and during April the Special Ed people will visit me in person. I’m looking forward to that!


Mommy and Daddy have been working on some other things for me. Since the beginning of the month, they have been performing Beckman Oral Therapy on me, both after the morning respiratory treatment and after the one at night. So far, so good. They say their main goal is to see me smirk on next Xmas. That may seem like such a silly goal to most people! And it is quite a goal and challenge for me! Mommy got an appointment for me with a Beckman therapist so I get the complete evaluation and they get hints or further details they may be missing (yup, they are always up for training… They are so relentless and tireless when it comes to me!).

Also, Mommy & Daddy have been trying to get me in an aqua-therapy program. They keep getting information about swimming courses, which is NOT what they aim for… It has been quite frustrating, until the Augmentative Therapist clarified the small detail they were missing: You must ask for PT in the pool, or they will think aqua-therapy is swimming. Gosh! We don’t know how people thing anything realted to therapy is swimming, but… well… New calls asking for the “PT in the pool” at least landed me an evaluation for that purpose in late April. We’ll see the outcome (I know it will be positive… And how I miss doing my exercises in the water!).

So, Holy Week is next week and it brings on an appointment with my pediatrician and the Beckman therapist, then Easter will be followed by an appointment with my physician for growth/AFOs/equipment appraisal, the Special Ed evaluation and the PT in the pool assessment… The excitement never ends!

GOD: Thank you for carrying me in your hands all this time. Thank you for giving me the strength, courage and will to live and be happy about everything that comes my way! Thank you for my family, especially for my new brother/sister… (finally, a play mate)! Thank you for bringing hope and dreams, and making it all come true. Thank you for everyday blessings, for so many privileges, for so much love. I put before you all the families that need you, so You may provide them with the blessings they need, healing, peace and love. In special, I ask you for much health for Emily so she truly enjoys her magical vacation, and for Stella so she has no more pain in her legs. Amen.


1 comment:

Maria said...

Yay! La DeeDee en su primera reunion de COMPU para su PEI inicial... LOL! De eso es mi clase de Educacion Especial, jaja!