Abilities Expo, Starlight & Avery

Yesterday I went to the Ability Expo in Edison, NJ. What a fun experience! I was so nervous at first... going into places with big entrances make me a bit queasy... I kinda choked a bit making everyone fuss bout me when we arrived at the place, but when we got inside I saw that there was enough space to roll around... and everyone greeted me with big smiles! That was enough to make me settle and feel confident.

There were so many booths to visit! We were greeted by our friend for Permobile and Mommy got a look at  a power wheelchair that is similar to the one I should get (fingers crossed). Daddy was drooling over all the mobility and transferring choices from nearby booths. We spotted our friends from Bussani Mobility and hurried there to say hello. A workshop about intensive physical therapy began, and I made sure to dig all the facts so I have many things to talk about with my PT and OT.  Afterwards, we found the booth for Motomed and chatted with Trae. I got greeted by a lady that was quite happy to see me. Turned out it was Karen Kain, a mommy to one very special girl (Lorrin) who is a big advocate for kids like me. My mommy missed talking to her, but me and Daddy had quite a blast as she is pure energy! She said my bright colors guided her to me! I wish everyone I meet were so honestly happy and cheerful. Karen, you are awesome!

We were quite hungry after that, so took a break to get some nourishment and replenish energy. Daddy got some kicks from buying me a colorful bib, I met two ponies, met a family who shared transportation woes with us, and then we listened to a horse ridding workshop. I absolutely loved the horse, and was quite excited to be able to pat it! This is nothing for Mommy and Daddy, as they are used to all sorts of animals (all too common in Puerto Rico) but I am a city girl and here animals are not everyday encounters! I was quite excited to get close to that big horse! I could not reach well, but she extended her neck towards me. That made me feel so special! Daddy took a short video of this... The first time I touch a horse! 



After the horse event we went on the hunt for face painting. We found the girl and she painted a lovely purple flower in my cheek! How did she know that purple is my favorite color? Hmmm... She added glitter to my flower, and it looked simply awesome! My sister was in line for that, but at the moment that her face was touched she riled up... Gosh, the little one is a tornado! With her applies the song about no: No touching, no holding, no nothing... I know, she is still to little to understand anything... At least she behaved while the rest of us enjoyed booths and workshops. After the face painting we went to our last stop, the switches booth. We checked all options for power wheelchair and computer accessibility... It seems that the best choice for using my power wheelchair should be fiber optics... so far I've heard that it will be ordered with mini joystick... I hope that it is the right choice... So, the day ended and we went back home. I hat-jacked mommy as it was a bit windy outside, and the way home was smooth. I had a long nap upon arrival! It was a perfect smooth-sailing day! I wish there could be more events like this... I definitively look forward to next year!

In other news, Mommy found out about an organization called Starlight Children's Foundation (nothing to do with Jem & the holograms, although they have to do with kids). These people have some programs that really rock. What they do? Well, "Starlight brings together experts from pediatric health care, technology and entertainment to create programs that help brighten the lives of seriously ill children and their families. Unlike any other charity, Starlight offers a comprehensive menu of outpatient, hospital-based and Web offerings that enable us to provide ongoing support for children and families — from diagnosis through the entire course of medical treatment". I'm looking forward to be part of their Great Escapes program. In their site they explain that Great Escapes "provide time to connect with other families and make special memories together". This is for the New York, New Jersey and Connecticut areas. I'm crossing fingers so me and my family are accepted, as this would mean a bit more quality of life for all of us. Thank you, Carmen, for this info!

Finally, I also have some news from the SMA World. A little friend of mine, Avery, passed away last week. She was only 5 months old. Most SMA babies pass away and the world don't get to know anything about them, their families journey, or the cruel illness that took their life. Well, thanks to her father, little Avery will be remembered by thousands and thousands. Even more, she became the lighthouse for our cause that many are following through the treacherous sea of SMA. Avery's blog, "Avery's Bucket List", took the world by surprise. Through the notes that her father wrote, Avery took over the hearts of many families around the globe. Avery's physical journey in Earth ended last week, but her memory and ethereal presence keeps on making strong changes that are nothing short of miraculous. Avery raised SMA awareness in an uncanny way, and her site has become the main beacon to fund Dr.Kaspar's gene therapy research. Dr. Kaspar's SMA Gene Therapy could cure SMA or at the very least offer advancements towards a cure for this genetic illness. Avery's cause hopes to raise $1,000,000 towards Dr. Kaspar's SMA Gene Therapy through Sophia's Cure, which is a non-profit organization so all donations are tax deductible. An anonymous donor will match every dollar donated up to $500,000 to help bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends! So, CLICK HERE and help gather the money for this, in memory of Avery. Help us fight and win the battle versus Spinal Muscular Atrophy!


GOD: Thank you for keeping me here in Earth. Thank you for the daily miracles that you perform around me, and through me. Keep on blessing everyone that I know, and all those unknown faces that somehow touch me. Keep holding me in your arms, granting me strength, courage, love, faith, peace and happiness in my journey through life. Amen!

SPRING FUN

The ending week of April brought in quiet blissful days. I love it when I'm able to be unbundled, reminds me of how the climate is back home. I spent some time just breezing, some time trialing a nice stander, and plenty of time building my double!

Hanging out in the living room, I am able to actually enjoy some quiet TV time when my little sister takes a napping break. Usually this becomes the napping house where everyone is sleeping... but I've been treated to playlists of vintage cartoons and concepts... Feeling retro!

I love this retro time. Mommy hangs out with me and Daddy fusses all around me bringing my food, suctioning, repositioning me... Yes, I love the attention. Although Mommy is driving me nuts taking so many pictures! Stop it! Can't see anything! Watch that flash!

I feel so comfy that a nap becomes mandatory! What can I say... At least I make sleeping look awesome. Besides, it is the best way to escape Mommy's childhood video selections (Cepillín anyone?). The worst part is that I do know that "En un bosque de la china" song... and the Pinocho song that actually can be quite unnerving because of the graphic descriptions of he poor wooden toy's wounds!

Yeah... That Pinocho song gives eough imagery to wake up anyone! Bah, is not like I had plans for a long sleep... I have more important things to do... like watching Wonder Pets, Mulan, and figuring out which sequins I will use on my next project...

So... I've been quite engaged with my latest school project. My teacher had the excellent idea of doing a realistic piece of art. What I did not know is that I was going to be the model! He took out a ruler and measured me: Eyes, nose, face, arms, legs... He then put together two big pieces of paper, and then I helped him outline me! Wow! This turned out to be something quite far out!
 

I just love how it captures my pigtails! And the glitter and gold! And the stars! I insisted that my hair had to be green (yes, I was going through a green phase thanks to my obsession with St. Patrick's day... bear with me). I love how we used colored stars to mimic my jewelry, and then how little by little my dress took shape! The detailing was impeccable!

And most importantly, it really looks like me! I made those crinkled flowers, and helped with the sequins around my dress. See those snazzy shoes? They definitively look very real! This is just what I would wear any given day, to chill around the house. Way cool. My life-like double! From head to toe!

Hard work pays off. Mommy always tells me so, and she is so right! I love how my project turned out. I am so proud of myself! Next project will be quite lovely. Last year it was all about bees, so this year the "in" crowd is made of gorgeous butterflies. Stay tuned for the outcome!

Mommy planned a trip to Insectropolis for Saturday, but we all woke up late and the day was too chilly and windy. So, we had a big movie marathon... serious lazy family fun. Gotta love that. Mommy did my hair, Kali watched TV while resting all over Mommy, and Daddy appeared with food. Perfect!

On Sunday I woke up in a foul mood, and although my parental units tried to "make contact", all I wanted to do was to be left alone... I played chasing the bunny in my Tobii, and then went on to play with the Mr. Potato Head... I wanted to play with Kai-Lan, but then decided that I was also in no mood for moving my thumbs... I know, I can be such a pain sometimes... When I get in some of my special moods people really have to just let me unwind on my own. I also get tired of things, you know?

Luckily I snap out of it fast enough. I am not bad, I'm just drawn that way! And so the weekend is gone... Mommy read some of my bedtime prayers, I paid attention, sang my prayers in my head, and off to Channel Z.

On Monday I did not have class. I practiced hard using my Tobii, and then had some fun with Nurse Mashaela. In the afternoon the stander guy passed by to take the demo equipment. I have to say that I love the Bantam stander. It was definitively much better than the Buffalo for me, leaving no marks on my knees and supporting me the right way. I used it everyday from the moment it got here, and I was definitively sad to watch it go... Now I'm crossing fingers so I actually get mine soon. Mommy thinks that maybe for my birthday, and most likely for Thanksgiving... but who knows. Miracles happen everyday.

So... I have high hopes for my Power Wheelchair to be approved and to come soon to me (I need a good chair badly, I can barely fit in my manual wheelchair). I really need the stander too (I can't use mine anymore, I am too tall). And while these wait for action and approval, I am also looking forward to an evaluation to check out the feasibility of me getting hippotherapy and aquatic therapy. Now, I am very nervous about these last two... but excited as well. I am definitively looking forward to this new month!

GOD: Thank you for allowing me to enjoy so many blessings, especially so much peace! I feel you all the time, and I am so happy that you allow me to experience so much! In you I trust and believe, everything that is important and that will help me will come at the right time... not sooner, not later. I know Your hand is over me, and that You oversee my fate. Help Mommy and Daddy so they have the strength and courage to do all they have to do... And God, please give many hugs to little Avery in my name. Extend your hand over her family and give them serenity and acceptance. And to everyone else... grant wisdom, peace, and genuine love. Amen.

Make a Wish: My Wishing Trip

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.

Little Airplane

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!

Happy Easter!

 

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!

At ER

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...

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

Mesmerized

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.

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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.
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