Friday, March 30, 2012

Using my iPad2!

Using my iPad2 and my TobiiP10
On March 9th I won an iPad2 thanks to Project Mariposa from the Gwendolyn Strong Foundation. Just a week later it arrived by mail, on March 15th. It was so exciting to open up the package, and actually being able to touch it!

Saying Thank You, GSF!

Turning it on for the 1st time

Listening to how to use the iPad

Thanks to my friend Catalina I just got a mount for it this week! Now I can really use it! Today, Daddy attached the mount to my Tobii's pole so now I have my communication device and the iPad both accessible from bed and from my wheelchair. The mount is from Ram Mounts, and it rocks!

Hanging around


Techno geek

Chillin' with VeggieTales

Here's the video of me opening my iPad when it arrived, and of today when I actually was able to use it. Patience paid off!

I am so excited at everything new that I will be able to learn now! Not only will this electronic tool help me for my occupational therapy goals, but it will allow me to do other stuff during my home instruction sessions. And now when I am out and about I will really have a way to communicate beyond just a blink or a frown. A simple thing can be life-changing. I am very grateful for this, and hope that all other SMA kids who still have no access to such technologies can win one soon! Thank you from the bottom of my heart, GSF!

Besides being happy for all the things that are going on in my life, I ask of all my friends and family to please send many prayers for my SMA friends Emily, Carter, Amanda, Addy and Grace who have been sick, in the hospital, or desating, and for baby Blake who gained his wings at just 4 weeks old. May God put His hand over all of them, heal the ones that are here on Earth, and hold tight the little angel that went to him today.

For those of you who do not know:
The Gwendolyn Strong Foundation (GFS) is a nonprofit organization dedicated to increasing global awareness of Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children, accelerating research focused on ending this cruel disease, and supporting families impacted by SMA and other life-altering conditions. Project Mariposa is an initiative of the Gwendolyn Strong Foundation (theGSF) with a simple mission: to make the world more accessible to those with severe disabilities through targeted technology product grants. Mariposa is butterfly in Spanish -- theGSF's signature symbol -- and like a butterfly emerging from it's cocoon, Project Mariposa will help those with disabilities to spread their wings. Project Mariposa will initially focus on granting iPads to those impacted by Spinal Muscular Atrophy (SMA) -- 50 iPads in 50 weeks. These incredible devices, coupled with the growing application library that accompanies them, are literally life-changing in assisting with communication, education, and independence.

Sunday, March 25, 2012

MaW First Visit!

MaW First Visit!
What I thought was a prank from Mommy and Daddy became something very real! Thursday and Friday they kept on explaining something about wishes, asking me the 4 basic questions: Do you want to be someone? Do you want to meet someone? Do you want to go somewhere? Do you want a specific thing? They kept telling me to think big, even if silly. I just thought they were just asking for the sake of asking... I played along, answering some of the questions, rolling my eyes whenever something seemed silly... Now, imagine my surprise when two young ladies came to visit me on Saturday to ask me about what I wanted to wish for! I froze... So... it was not a big joke? It was not my parents being silly? It was not a game? Wow, this is a real thing! I became so nervous! I even told mommy that I was scared! All I could think was "Wow! With great power comes great responsibility!". I gazed upon my minions as they exchanged words about what I said I liked and not... This comes as a big surprise! What a big day! And the possibilities that I heard really really floored me!

In the core I can be such a girly girl, even if I try to play things tough. I still love Wonder Pets, I don't think that love for my BFFs will ever die. I told mommy and daddy I would like to visit an animation studio. I like Kai-Lan, tolerate Dora... I can even show some kind of affection for the Gabba crew and Blue. But I definitively insisted on two things that would be out of this world: Meeting Pocahontas, and meeting Mulan. These two gals inspire my life with their courage, strength, and their wisdom and love. Of course I wish to go where they are... And meeting all the other characters I love would be a plus. I don't grow tired of Nemo and Simba. I enjoy so many things that fall under the category of all things Disney. Ariel was once right there just with my BFFs... but I no longer want to be "part of the world above"... I know I already am. And I now I can make change happen. And that is just what Mulan and Pocahontas did around them... they changed everything. I can change everything. I am just getting started!

I  enjoy nature and animals so much, and I got the idea that perhaps I could even swim with dolphins (hey, they told me to wish big). That would be an out of this world thing that I would never forget! I even thought of wishing being in a zero gravity room, just like the astronauts... so I can move. I guess that is the core biggest dream of all kids that cannot move on their own... Being in the water with dolphins helping out, or floating as if in space can make that happen... Still, having Mulan and Pocahontas hug me can be quite priceless in itself! Choices, choices!

I still have time to think things through... I will make my big wish after I visit the Wishing Castle. I've heard amazing things about it, and it should help me get a sound idea of what I want... the biggest thing I want! I should make that big choice/decision in April. Right now... my head is just spinning with ideas, as it all really took me by surprise! It was not a joke! I was granted a big wish! And I have the certificate to prove it! How cool is that!

Watching movie, using Tobii, holding Pocahontas
This was the biggest top of the world event this week. While the wish was cooking, Mommy also worked on getting some paperwork for hippotherapy and aquatic therapy. Soon we will all know if the efforts really work. These two therapies would definitively enhance my progress in school matters, along with many other benefits. I don't understand all the details, but Mommy and Daddy do... so I trust them.

The next few weeks should be eventful as well: IEP reunion, Holy Week, visiting the castle, Mommy's birthday, doctors appointments... And I hear things that are brewing but I am not to know yet. The mystery! Oh, I really dislike not knowing everything that is going on! But I really like knowing that so many cool things are happening as I speak, and that I have many things to look forward to... So many people are working to make sure I get all I need, and to make sure that I feel their love as well! I keep on being humbled almost everyday with so much kindness. I promise to work hard, and to do things that inspire others. It is the least I can do.

Me and my sister Kalisto
God: Thank you for all the things that have taken place the last couple of weeks... You had all these surprises planned just for me! You don't cease to show me just how much life is worth living, and just how much You expect of me! Help me keep on with courage, so I keep going through thick and thin. Make me an instrument of You. Help me understand Your will. Help me understand Your sacrifice through Lent, and the gifts You grant us all through Jesus. Please keep the Sniezek family in Your arms, granting them the serenity they need through the hard times they faced. Keep all of us in Your arms, fill all of us with Your love. Amen.

Tuesday, March 13, 2012

Positive Possibilities

This year had a rough start, but it seems that now things are making up for it all! March came in with a bang!  What am I talking about? Keywords: Make-a-Wish, iPad, power wheelchair, and meeting a very special friend. Here we go!

Some days ago I got a notice from Make a Wish that I was granted the right for a big wish! Imagine that! Now I have to think what do I really want... Big wish! Big idea! Gotta ask Pinky-dinky-do for help on that one! Of course I do have some good candidates to make my dreams come true... I love Pocahontas and Mulan, I love Kai-lan, I love sea creatures, I love space... I love princesses, I love Wonder Pets... What to wish for... Mommy and Daddy showed me a coloring book with some wish ideas, and I know something amazing will pop in my brain. I am just puzzled, no one has ever asked me about making a big wish... I just make my normal birthday wishes, and I pray hard to God for so many wishes to come true... One big wish... That is my next task for the rest of the month.

With this wish granting thing also came a big invitation to visit the Samuel & Josephine Plumeri Wishing Place, the Make a Wish castle (headquarter of MaW in NJ). The act of wishing should be a uniquely magical moment, an event that is somehow out of the ordinary, taking place in an environment free of limitations, confinement, or stress. This is such a place, and it is simply AMAZING that me and my family will get the opportunity to go there... I just KNOW that my BIG IDEA and BIG WISH will come forth there! I just know it! And I'm so happy! Good news, at last!

Following the happy frenzy of knowing that I have a big wish to wish for... I also got a notice two days ago that I won an iPad 2! Imagine that! I've been dreaming of having an iPad to meet so many occupational therapy goals, as well as to be able to communicate while on the go... I thought I would never get to have one. And then, on Sunday, I got this message in my email: "Congratulations! The Gwendolyn Strong Foundation (theGSF) has selected Deirdre as a recipient of our "Project Mariposa" technology grant program. As a grantee Deirdre will receive an iPad 2 and a $50 App Store gift card. We were incredibly moved by your application and we hope that this grant opens the world for Deirdre for years to come". Imagine my surprise! And imagine my happiness!!! I will finally be able to actually use one! I will finally be able to show just how mighty my fingertips are! I can't wait for it to arrive! I am so happy and so grateful! I just know this little thing is a big step towards more independence. Look out, World!


Today I had an appointment with the pulmonologist, and imagine my surprise when I spotted someone I see all the time in my computer! My online friend Mary was also there for a checkup! Getting to meet her was so cool!

I also had the Permobile guy and the ATP visit me today. Measurements were taken, and hopefully soon I will get to have a test drive... I'll think by my next birthday, if I get lucky (fingers crossed).

Mommy is working on getting some aquatic therapy and hippotherapy for me. It has worked well for other SMA kids, and we hope it all works well for me too. But first she needs to get the services in place... She is trying to settle things up with the school people, but they are failing big time in terms of my regular services... I don't know if they will actually be able to do anything else... PT and OT are ok, but I have not had my SLP for four weeks now, and there has been no AT assessment since classes began. The video-conferencing saga keeps going... It's all very dissapointing... Mommy is trying to make things happen... I hope things get back on track soon. I hope everyone sees that it is not just that I want these services... I actually need them. I also hope that somehow I can get to the camp at the Museum in Summer. It is one of those little things that made a big difference in my life, and I would definitively love to go back... I'm praying that the Department of Education sees the light and get to agree on things. I just want to move forward... I am tired of moving backwards or not moving at all!


As you can see, there is not a dull moment in my life. I'm using my ActiveCycle, I'm enjoying many St.Patric's related themes, I've been brainwashed by educational videos, I am loving my figit friend, and my new books rock (Mommy got me a bunch of books to revamp my library)! I hope that Springtime doesn't make things difficult (a bad allergy season is ahead) and that even more positive things are soon to come true!

Thank You for so many blessings! Each day You make certain to take care of me and my people... I am humbled by all the things You do for me. Thank You for carrying me in Your hands at all times, for protecting me and loving me so! May everyone who needs You feel You as strongly and real as I do! Amen.