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.


1st VISIT to the DENTIST

Hello everyone! Mommy has been busy handling so many appointments because of my new sibling (If you want to read about my new sibling please visit the blog A New Mage in the Family: Chronicles of a Spellbound Baby), so updates where on hold. Weeks are getting a lot busier between my appointments and Mommy’s appointments… It is all very exhausting! Anyway, here are the news for what’s been up with me.

On March 18th I had my very first dentist checkup. I was happy to go out in such a lovely day (finally the snow melted!) and I was blessed with having the same ambulance team that really gets me. We arrived at UMDNJ and waited a little while outside. The building looked a bit spooky, not like the others I’m used to go… People, you need more light! An old friend was nearby and could only stop to say hello from far, my photographer from the Little Heroes Project. Mommy did not recognize her right away, as she needs new glasses, and felt quite bad about that. Anyway, after a small wait a young doctor arrived to interview us and get my history. Then we were taken inside.

They kept me in the ambulance stretcher, and checked up my teeth and gums. Yay, Mommy and Daddy and NurseMashaela have been doing an outstanding job! My teeth were cavity free and very very clean. Since I already take vitamins with fluoride and have good dental hygiene there was nothing else to do. Daddy’s main concern about my two front teeth was dismissed for now (they were coming out when I was intubated last year in Spring, so they completely came out while I was in the hospital and were crooked because of the tube). My lower jaw is a bit over the upper one, because the upper one gets all the pressure from my bi-pap masks, but for now that is not a big issue. So, I’ve got a brand new Winnie the Pooh toothbrush and a tasty dental paste. It was a nice day with uneventful trips. Upon arriving home I had quite a long nap!

GOD: Thank you so much for all the people that help me, and constantly give me so much love! I am truly blessed!


Tuesday, March 9, 2010


February went by without any commotions. My therapists have been coming and going, and I have been showing quite some attitude. Sometimes I pay attention, other times I simply don't feel like it. I have been a bit moody... The latest snow storm almost made me sick, but thanks to my flu and Sinagis shots nothing went beyond constant respiratory therapy and preventive care at home (gotta love Daddy and his dedication to me... he REALLY makes sure that nothing hinders my breathing!).

Last week a loan of a sensor-touch switch arrived, and it has been much better than the Microlight (which has been quite frustrating for me as I don't have much strength to activate the clicker right now... I do sometimes, but after much effort and I end up sleeping after loosing interest, or being very mad and annoyed).

Today had an appointment to see Dr.Bach and Lou. They were quite surprised to see how big I've got, and happy they haven't seen me in a whole year. They liked the mask that I am using during the day and covered some of its holes to optimize my breathing. My vent settings were 20 breaths per minute, 18 of pressure with sensitivity of 1, and they changed it to 16 breaths per minute, 22 pressure, with sensitivity of 2. So far so good. I also got a ESG test.

On our way back, a crazy guy crossed from side to side in front of the ambulance. We had to make a sudden stop, and it was quite scary, but no one was harmed. The guy just parked as if he didn't notice what he did... Some people are incredible, huh? Mommy ended up with a strong migraine and was off duty for the rest of the afternoon and night. Me... I simply kept on being happy, enjoying my Wonder Pets, and then having a nice nap. The night treatment went on smoothly.

This week promises to be a crazy busy week for Mommy and Daddy. Also, my beloved Auntie Gladys's Birthday is on Thursday! I hope I can get to be there virtually by phone. Godparents, pictures please! :)

God: Thank you for so many things that little by little You've let me accomplish. Thanks for helping all of us, and protecting us and guiding us through the high tides. Take care of anyone who desperately needs You, and let healing and love become a reality in or world. Keep us in Your hands. This week, I have a small favor to ask: Keep on giving Auntie the strength to carry on, let her be well so she can live many many more years... so she can move with us as soon as we get well established. I get sad when I think of Auntie beeing all alone in the island, but then I know You are always with her, making sure that she is allright... Grant her that birthday wish, that all of us will be together again. Amen.