Walking Among Dinosaurs!

This week has been far out! Yesterday I had my last PK4 class, in which I learned a lot about dinosaurs. My teacher also gave me a certificate for all my good job. I am ready to tackle Summer learning and then Kinder! I know he is so proud of everything that I have accomplished! And really, he has been the stepping stone for my academic foundation... From the first day that he came to my house, he believed in me. He has treated me all this time with kindness and understanding, as well as he has seen beyond my physical limitations. He knows I have a brain, and I know how to use it. He has fed my thirst for learning so many things about the world that surrounds me! And hopefully he will get to witness even more accomplishments. Thank you for everything, Mr.Farina! See you in two weeks!

Today Mommy and Daddy gave me a BIG surprise! My grandpeople wanted me to celebrate my graduation, as well as they wanted to celebrate my little sister Kali's birthday, so they sponsored a trip to see dinosaurs in a special zoo! This zoo is called Field Station: Dinosaurs! Wow! I had been blasted with dinosaur information and movies since last Friday, but I had no idea that I was going to witness live dinosaurs... And they are humongous!

Here are some pictures of my trip. Enjoy!

First encounter

This one moved that neck like a snake!

Right next to my sister

Info for the big neck guy

Another info station

I think this one is herbivorous

This one looks mad!

With Mommy

Those horns look quite sharp

Mommy checking on me

More info

A campsite!

Info station

Bold Daddy!

That winged one is awesome!

Almost as awesome as me!

Kali and Daddy

Feeding the T-Rex

Hah! I almost missed this one!

More info

Ok.. I stayed away as far as I could from this one

Info, and more info... I thought school was over!

Ok, I'll admit I liked listening to the explanations

This one reminded me of an alien! And is quite tall!

More info, of course

Kali takes a break (Thank you Crayola station for precious moments of silence!)

Mommy convincing Kali not to join the dinosaurs

I think someone was stalking us...

No stalkers. Much better!

And so, I can actually say that I walked among dinosaurs! It was quite an enjoyable day, breezy and sunny. Mommy put some sunscreen lotion on my face just in case, I tend to burn quite fast under the sun. I had a short nap under some trees, and I definitively loved the scenery. The locals are quite loud, some may seem scary... But I was not scared. And I am proud to report that my little sister was not scared either. Actually, she wanted to join the small ones with the sharp teeth! She kept screaming because Mommy would not let her go into the wild...

After a day filled with excitement I went home, had a nap, and watched Dinosaur. Now I'm just relaxing and waiting for my last treatment of the day... I am beat, and gotta rest. From what I hear, I will get my eyes checked up tomorrow. I'll definitively have some dinosaur dreams! Thank you Grandma Edna and GreatGrandma Gladys! This was definitively fun!

God: Thank you for keeping me safe during my adventure today, and for allowing a great break from my routine. I count my blessings and keep hope and belief that many good things are in the horizon, waiting for me to reach them. Help me go on, so I can prove to the world that I can do anything. Amen.

My PK Graduation & 1st Movie Outing!

June came in with many things going on... I am glad that there are so many things to look for in the future, and that I have been blessed with so many good people around me that makes things happen! Days are getting busier and busier... I am really looking forward to the days of school break that will end after the 4th of July.

Last week, my teacher got in touch with the school to which I am suppossed to belong (remember that I get home-bound instruction). The principal was happy to include me in the graduation! Imagine my surprise last Thursday when I got all dressed up to go out... and ended up visiting a school!

The little celebration meant so much to me! At least now I know there's actually something to look forward after so much daily hard work. I just thought that making crafts and learning about the world, animals and things were just things for kicks... Now I know that it all actually matters, and that people actually take notice of all I have done!

I was so surprised by so many people congratulating me and expressing their happiness and love for me... even people that didn't know me! My heart almost skipped a beat when I heard my name! I felt a big sense of being proud of myself when I got to hold the diploma. I know Mommy and Daddy were all smiles, and they constantly told me how proud they are for all I have achieved. It was a very special experience that I intend to repeat next year. Just wait and see!

The day was very hot, so I had to rush home and not follow through with something special that Mommy & Daddy had plan... But they told me not to fret, as next week they will give me the big surprise. Talk about being mysterious! I was just glad to be back home in my "controlled environment". My skin went back to being itself (I was turned into a lobster by the heat!) and I relaxed. Going out excite me, but it is also very tiring... I did not miss my OT session, and afterwards I got to have a loooong well deserved nap.

On Friday Mommy was very busy, as my little sister Kalisto had her birthday coming up during the weekend. I was cool about it, I know I have to share Mommy... And besides, Mr.Farina came in to read me about dinosaurs... and then I had my cycle workout. My PT and OT came in to fill-up the afternoon. I have quite a busy schedule... I was happy to finally be able to watch a movie in the evening. I need more relax time.

The weekend featured two big events: My sister's birthday, and my 1st outing to the movies! I was quite surprised when Daddy prepped me up on Sunday afternoon and said we were going to the movie theater! I had no idea of what that meant. I mean... I know what a theater is... I was on stage last year... But, a movie theater? Well, I went, I saw, I enjoyed, and I came back to talk about it. I saw Brave! I had seen some shorts about it during the week, and I had told Mommy I wanted to see it... I just never expected to see it in such a big screen! It was humongous! Gigantic! Titanic! Yup, big. In the beginning the whole thing was not too convincing for me, but after a short nap I woke up and actually enjoyed the story. In the end I told Mommy that yes, I liked it. And I definitively want to repeat the visit... Animations and comfy cozy environment always get my two thumbs up!

So... Weekend is over, and now I am to face the official last day of school, and some medical appointments for the week. This train makes only short stops... it keeps running and running, and making me feel so happy to be alive! I love learning. I love thrills. I love animals. I love planting. I love reading. I love singing. I love Mommy. I love Daddy. I love my friends. I love life!

Thank you, God, for my life. It is not easy, and I get frustrated, but I know that without the bad the good wouldn't shine so bright... And wow, how everything shines right now! It is all awesome. I am never giving up!

GETTING MY DIPLOMA!!!
Here's the short video of when I was called and I grabbed my precious diploma. It was really hot as a heat wave was going on and there was no A/C in the auditorium (or at least it didn't felt like it was on). The principal of the school, Mr. Carlo, gave me the diploma. I tried to put on my best face, but the heat had me looking like a lobster and I was wiped-out! At least I managed a smize! Enjoy!

Father's Day

I Love You Daddy!

I made this card for you

And this thinguie-holder

All I have is love

And that is more than enough

Awwww, Happy Daddy

Erm... Stop the pictures! Geesh!

All of us... Well, mostly (Kali is sleeping)

Running to get a bath

Waterbomb!!!

GOD:
Thank you for allowing me to be with my daddy. He is silly, and he always makes me laugh. He also takes good care of me... He is my best nurse ever, caregiver, guide, friend, confident, gadget guy, model, cook, personal trainer, and fashion designer in training. Please take care of him... he is very selfless and always takes care of me, and of my sister and Mommy. Protect him and let him always walk in Your grace... Let him know that although I cannot express it well, I am always there cheering for him and sending him hugs and kisses and all my love. He really is my hero, he has saved my life countless of times... and even in the face of adversity he stands strong and keeps a kind and gentle heart filled with the hope that You always pour upon us. Thank you for him, one of the greatest blessings in my life.  Amen.

Weekend Getaway & News Update

It has been quite eventful days in my household. As usual, the combination of many unfortunate events unfolds... but somehow the string of bad things end up in a big good bang! Goes to show that although you suffer a little and get unnerved a little there are also moments to enjoy a little. Nothing is simple in my life.

The past two weeks have been filled with action and drama, mainly thanks to my service providers not providing! Oh, I must confess that it has been quite entertaining listening from my bedroom to the roars coming from Mommy's cage... erm, office. Turns out that after waiting for the outcome of submissions to my insurance about my new stander and new therapies, the paperwork got lost in the Matrix. No, literally... You know that point in cyberspace where someone send a fax and the other person never gets it... but apparently someone did get it because the sender gets a receipt? Yup, that single point. So... after waiting the mandatory weeks to know if things are flowing smoothly, Mommy gets to find nothing happened... Again. May I repeat the again? This has been the story for almost three months. Long story short, now things are supposed to be "back on track". But all of this won't make anyone from the insurance people bent their ways... We have to wait for an answer in two weeks.

Never-ending story. If I were a princess in need of saving the dragon would have already have me for breakfast! To be fair, Mommy is not blaming just insurance... When she worked in "corporate America" she would call the receiver alerting him that she would send a fax, then she would send a fax, and then she would call to make sure it was received. All these people on whom I depend for my health and well being do not confirm things making a simple phone call... or sending a simple email. What a crappy service! Don't they know that by being a bit more proactive they would get their jobs done in the first try, everyone would be happy, and there would be peace in Earth? (Sigh) And so, paperwork gets lost, people get angry, and the Dark Side gets new recruits. We will see if in the end I can finally get a new stander, hippotherapy and aquatic therapy. Now I also need another power wheelchair test, to see if fiber-optics is best than mini-joystick for me to control it... I foresee that Santa may bring me a huge gift if the report says I'm nice.

Just a comment: It may not be so, but I really feel that I am not that important to these people who are supposed to help me get the tools I need. I wonder, if I were their daughter... would they move faster and more efficiently?

SOME AWESOME NEWS!

I got a notice at the beginning of June that I won a vacation getaway for my family from the Joseph Lillo SMA Foundation for Children! Yup, that's right, it will be a weekend at Virginia Beach, with all expenses paid including food, gas and doughnuts! Now how cool is that? I got very excited about this! I'll get to see the sea in person! The last time that I was near a beach I was 3 months old. And I was lucky, my little sister has never seen a beach at all! Mommy keeps dreaming of lighthouses and salty air... Daddy just wants to see us happy. And happy is an understatement! Forcefully living between four walls is not exactly fun. We make-believe we are back home in our tropical little island, camping out under a coconut tree and enjoying the sunset... Although imagination is cool, the real things beats it all!

Last Friday, June 8th I got a visit from some members of the foundation. Just so you know, this is a non-profit organization committed to raising awareness, and raising money for research and medical equipment for families affected by SMA and other disorders. Little Joseph earned his angel wings when he was just three months old because of SMA, and through this foundation his legacy of hope keeps on thanks to all who loved him dearly. I met Joseph's mom, Rose Ann (director and founder), and Monica (event coordinator) and Angelo (trustee). When they arrived I was quite asleep, but soon I woke up to witness what the fuss what about... Imagine my surprise when I realized that it all was about me! It was almost as if I had witnessed the Three Kings bearing gifts! They brought two big baskets filled with beach goodies: Towels, sun lotion, toys, goggles, shades, toys, bubbles, inflatable stuff, hats... Did I mentioned toys? So many things for Kali and me! We are going to have a blast!

I explored it all in depth after they were gone. Kali definitively started the party playing with all the sand molds. After opening everything, and realizing what I am to experience soon, I even requested my old Little Mermaid doll! Yeah, I was kinda avoiding her (her songs bear a very personal message for me...) but I think she may be back to stay, I can't deny I love her. Of course that love is enough for Pocahontas and Mulan too. There is enough of me for you all! We got a little taste of what things will be under the sun right here under our roof... Saturday and Sunday were pool time at my home! Gotta admit I love it, even if Kali annoys me so much with her happy squeals. Nothing beats being with Mommy and Daddy. Thank you so much, Joseph, for bringing more friends into my life, and for smiling upon us and helping us make more memories!

GOD:

This week I ask that You give big hugs to Gracie and Hayden, your new angels in Heaven. Give courage and peace to their families so they can keep going until they all meet again. Keep my friends and family safe and keep carrying me in Your hands so I am able to do as You want me to do. Let me be a messenger of Your love and Your peace, let me change lives the same as I have been changed by others. I am so humbled by all the blessings that You bring into my life, and grateful beyond life itself! Thank you for allowing me to experience all these things, the good that makes me want to keep going on and the bad that makes me appreciate the good even more. Thank you for always surrounding me with people who love me and help me. I look forward to all the miracles that You bring into my life everyday, at all times. Let me gain wisdom, insight, and joy from it all. Amen.

In the Pool & Chillin'

Summer is finally here! And I am so glad, because that means pool time! This year we have a new bigger pool. Love the space, now I can really move in it!My OT and PT sessions emphasizing arm, hand, fingers, legs and feet control are paying off. Sometimes the right-left commands confuse me a bit, but get it straight right away. I love being in the water, it is so relaxing! This was a perfect afternoon!



I am also spending more quality time with my little sister. Every now and then she invades my room and actually sits down to watch whatever I am watching. As long as she doesn't pull my cables, all is cool. Here's a sneak peak of one of those rare moments when she stays put and we can both share the same videos, in peace!



The past two weeks have been a bit troublesome in terms of some services... I've heard Mommy and Daddy not being too happy while speaking in the phone... Insurance woes, then therapists woes, then agencies woes... even doctors woes. Wow! Why people just don't do their job and make Earth a happier place? I know I do my job, and I always get a nice big sticker as a reward. Perhaps Mommy and Daddy should get some stickers and give them to people whenever they do a good job, so they feel as good as I do. Hmmm... I will definitively suggest this idea to Mommy.

I am happy I finally have a SLP. She is awesome. So far she makes me feel as good as my favorite teacher. I hope she gets to stay, she reminds me of all the ladies I see in the videos that I like so much (you know, the book readings... I LOVE them!). I hope that for Summer school and for Fall I keep the mighty team that I have. I am learning so much, and I am showing all the hard work that the sessions demand really pay off. I'm moving a little, but my goal is to move a lot. You will see! If God helps me (and I'm sure He always do so) I will surprise many people even more... Just watch and be my eye witnesses.

So... All in all I am counting my blessings and hoping all my plans come together. I hope that after all struggles I can finally enjoy simple happy moments and the fruits of my hard labor. Hey, I study and work hard, so I deserve some off time! I'm looking forward for the end of classes break... I heard that dinosaurs have come to NJ and are staying nearby! I also heard something about a very long bridge! And of course I am looking forward to the museum afternoons... I hope all the friends I made last year are there again. I really miss everyone.

GOD: Thank You for allowing Shannon, Carter and Mary to go back home safe and sound. Please keep them safe, and help all other kids struggling with illnesses and injuries. Thank You for all the blessings you keep sending my way. I am so humbled by the way You take care of me and my family. Thanks for showing Your love for me constantly, and for all the miracles You perform daily in my life... and in the lives of so many friends and family! You are truly amazing! Amen.