Sunday, April 22, 2012
This week was another very exciting week. Seems that each day a big new surprise arrives! On Monday 16th I woke up to the awesome news that I would go to the Make a Wish headquarters in New Jersey, which is within a castle! The morning seemed so long as my excitement built up! I took my class, my physical therapist arrived... and I was getting quite antsy about it all. I did not want to be late for my big appointment!
Finally, off we went towards our newest adventure! It was a nice day, and the road was easy. It is almost as if everyone knew and simply plotted to make way for me. It is always nice to see green landscapes and flowers, a sight I often long for as there are no big green patches in Newark. It would be so nice to have a garden nearby... Anyway, we made it to the Monroe Township, and imagine how I felt when we arrived to an actual castle! I thought Mommy and Daddy had been on joking mode, but no... it was a castle... I started worrying about dragons being nearby...
As we went in we were greeted and made feel at home. I absolutely loved the stained glass art depicting a lovely princess (who has no hair as she is a cancer patient, and so represents all illnesses that affect kids on the outside), and a knight (who seems to be fine, representing all kids with illnesses that are invisible to the eyes). Inside, everything is well lit as there is a big sunroof that allows you to see the sky. I could see that there were big rainforest leaves creeping from the second floor... To one side there is a big wall filled with stars! Each star bears a name. The biggest stars represent the people that have made the biggest donations to the organization. I just think so many stars together look awesome! But then I am a big fan of the night sky... Mommy has told me many stories about the starry nights back home!
We went through the rainforest on the second floor, to a room made for inspiration. I felt so comfortable there that I took a 15 minutes power nap! My sister Kali spent much energy running around and making the seat/pillows roll. As I woke up, I was taken to the secret chamber called the Wishing Room. Now, I cannot tell you about what is in there as it is a secret room that only can be viewed by those who are to make a wish... the most important fondest wish on your heart! I went in... and took the magic home with me. I know everyone around me felt the magic. A few things have made me feel so special, and this definitively enters the list. I am so humbled that this has happened to me!
After making my wish we went back downstairs and took some pictures as memento of my special day. I was told that now I have to wait patiently, and keep my wish within my heart, so it comes true. And so, I will. The journey back was filled with dreams dancing in my head, and the strong belief that there are so many wonderful things ahead of me... I cannot even begin to imagine it all. The good things always put the bad things behind, conquering them. I know that there is so much people working hard to make me happy, my life is filled with love without strings... Courage, faith, family and friends... Now THAT is how you live life to the fullest!
The rest of the week was quieter, although not uneventful. On Tuesday I got a demo for a new stander, the Bantam, and so far it is exactly what I need. I will get to keep it for two weeks. Hopefully insurance will approve it after that... and a new one should arrive maybe for my birthday (yes, I'm being extremely positive here but that's exactly how I feel right now). I also had a neurologist visit just to say hello and goodbye... gotta love my social life. Wednesday and Thursday I had some tummy trouble, but I was back on track by Friday. On Saturday the day went smoothly, watching movies in the living room while trying to avoid my sister (she kept pulling away my mask... I wonder if I should be concerned...). Exciting days, exciting life... That's my life. And I'm only getting started! Look out World!
GOD: Thank you for showing me just how special I am, thank you for bringing so much hope to my family and to my life... and for the constant love that is all around me. Keep on carrying me in your arms, blessing my life and the life of those around me. Amen.
Posted by Vierna at 6:45 PM
Wednesday, April 11, 2012
|The Medina Family after the Amazing Potato Transformation!|
Today one of my dreams came true: I visited the Little Airplane animation studios. Some of you may not know them, but it should suffice to say they are the people behind my favorite band of heroes: The Wonder Pets! I was so excited when Mommy told me that she had a big surprise for me! After watching some Small Potatoes videos she break the news that on Tuesday I was to go visit the people that makes the potatoes, my heroes, and so many other animations. I was too happy and just couldn't go to sleep right away. I didn't expect that Mommy would take my request so sewiously...
I guess that when I finally fall asleep my friends were singing in my dreams, as I woke up too happy and too eager to go with the day. Even my teacher and my therapist noticed I was giving the extra mile today... They were really surprised to know where I was heading in the afternoon. I don't usually get out from home on a weekday. All my outings are carefully planned... And they were excited for me, as they all know just how I feel about my dear animated friends!
We got in the car and the small big trip began. We all had no idea that Newark got so much traffic in the afternoon! Wow! I started to worry that we would not make it. I stared at Mommy, trying to see if she could read that fear in my eyes. I don't think she noticed much, as she was quite crossed especially when we had to go through the tunnel... I think Mommy does not like closed spaces. She was too happy when we finally got out.
After feeling like lab rats running through a maze we finally arrived at our destination! Alex, Air Traffic Controller at Little Airplane, came to meet us and to take us through the portal to land in the land where imagination rules. I paid close attention to everything that he explained. I met one of the artists, who explained to me how the episodes are made... Wow! So much work! Storyboards, proposals, individual attention to characters... Drawing here, cropping there... And so much work! Did I mention that it is all so amazing, and a product of so much work? But more than that, it is all a big product of genuine love for kids just like me! I had a blast, absorbing every detail of the presentation. I did not like it when Ming Ming turned green, she is a lovely shade of yellow thank-you-very-much. And I hope that someday when I grow up I can get to do something as amazing as all this. I keep looking at it all, and I just know that each episode that I watch is magic. These people are all magicians, and their spells are quite powerful and compelling! Ming Ming rules!
I was tired by the time it all ended. It is usually my nap time, but I forced myself to be awake. This is not something that happens everyday! So, when it all finished I went into a happy nap that was short but enough to power me up for the trip home. I woke up as we reached our car, and I said my farewells to Alex. The way home was longer than expected (3 hours), but it was filled with songs, creative thoughts, and much excitement and joy. If I could jump of joy I would have reached the stars! What a perfect day! How good it feels when something you didn't thought possible comes true!
Thank you, Little Airplane! Through the years you have filled my life with songs of joy, feelings, dreams and hope. Through your creations I have discovered much about the world, and about myself. And you have given me my best friends forever, a trio who stick with me through thick and thin: My animated heroes... my Wonder Pets! Until next time!
Posted by Vierna at 12:36 AM
Tuesday, April 10, 2012
What a week! My tummy trouble was sewious! At least serious enough for Mommy to insist that I should be checked up at the hospital. Off I went, and just earned a very small stay to make sure my hydration became stable again. My high heart rate was due to colic that was coming and going... 24 hours later I was released... basically on Wednesday afternoon. I was happy to go home, I needed a nice bath and full pampering! They just don't keep my beauty ritual in the hospital, how rude!
I spent Wednesday and Thursday recovering and watching What's in the Bible. Since it was Holy Week I also immersed myself in a small project that had 3 phases: Building a donkey, then shaping leaves and finally doing a foamy diorama of when Jesus went into Jerusalem and people received him with palms. I was to do complete another project, a wreath for the Last Super, but the whole tunny trouble left me too tired. Basically those were "resting & recovering"days.
On Good Friday my OT came in early in the morning and we finished up my stained glass project. We also did a construction paper bunny, which I really enjoyed. On Saturday we completed the egg project, in which we dyed some eggs and decorated them. Way cool!
Easter Sunday was quite eventful. Not only does Jesus comes back to life and saves us all, but Mommy also was born ages ago! Daddy got a big special cake, decorated it with some marshmallow bunnies and chickens, and we all sang along the birthday theme while Mommy blew the candles and made a wish. What a great year! Even Mommy gets to make a wish!
We all had fun and watched happy videos and movies. The latest on the What's in the Bible series arrived, so we watched it all day long. The Easter Bunny left me a big bag with stuff. I got some Snow White and Belle Squinkies and a fairy tales book (courtesy of Pirate Godfather), candy, and a big plush froggy (courtesy of Pirate Medina). For a moment I thought maybe Christmas came early! My sister also got a bag of goodies and her own tent/tunnel... And we both got to share a special card and its big booty, courtesy of Pirate Santiago! We also got to share cake!!! Plenty of it! It was great to watch Mommy laughing out loud... It is something that happens only on lunar eclipses.
So... Easter was a blissful family extravaganza. Love keeps on being in the air, and even the shrieks of my little sister were not that annoying. I am crossing fingers so we can have more days like this... What a blast would life be if this were a daily business! Love it!
God: Thank you so much for my family. I am lucky that so many people care for me so much, and that I am always surrounded by true love and so many songs! Each person that comes into my life is a song. It may be short and sweet, it may be loud and long... but everyone has a special note that always touches me and lingers within my heart. Thank You, God, for your sacrifice, and for the miracles You always perform in my life. You make my every moment magical. You are the greatest song of all! Amen!
HAPPY EASTER TO ALL!
Posted by Vierna at 9:56 PM
Tuesday, April 3, 2012
Bad tummy trouble. Have been restless for more than 24 hours... Mommy tried helping with Pedialyte, a heat pad, and ginger tea, but nothing... I keep getting distended after each feed, which is not normal in me! Mommy also noticed the ventilator doing 4 different sequences of changes at specific time intervals, so that needs a big checkup as well... The tummy trouble is winning, and it is just too much. My heart rate has been spiking during times due to pain that comes and goes. Mommy slept with me most of the night, and for a while that made me feel better (I think I really got some napping done by then). I spooked her with the weird hives that I get whenever I'm exposed to heat (I always have some kind of skin reaction whenever exposed to warmth... I am too special...), I guess that was a reaction to the heating pad. After that thing was off me, my perfectly rosy skin returned. Go figure... Daddy took me to ER in the morning, so now we are all waiting to get some results and answers. Hopefully it is nothing serious... The important thing is making sure I'm well hydrated and taking a closer look at my belly and g-tube. Oh, well... I'm crossing fingers so this is a fast visit and I'll be home in no time. In the meantime, hopefully I'll get to catch some Z's... UPDATE: Ok, so I'll have to stay for the standard 24 hours... With all the tummy trouble I did get a bit dehydrated and they want to make sure I am in good shape. They also want to monitor my high heart rate to see if it actually goes away...
Posted by Vierna at 12:18 PM