DEIRDRE MEDINA's DIARY: A LITTLE MAGE in the FAMILY

Insectropolis

noreply@blogger.com (Vierna) — Sun, 20 May 2012 02:27:00 +0000

Ready to be surprised

Oh Dear! Today I touched a tarantula and a millipede, and had a close encounter with a scorpion and an exotic roach! I guess all of these will go to my “1^st time” list. Today Daddy woke me up early (something very strange on a Saturday), saying that he had a special treat for me. He glammed me up, Mommy got Kali ready, and off we went to the road! I was just happy to go out, the day was beautiful! It was a nice surprise watching so many trees instead of buildings… and Daddy kept driving and driving. Mommy was a bit upset because of his driving, and Kali was very quiet (she was eating up some corn chips). We arrived to our destination, which turned out to be Insectropolis. Mommy found it ironic that a pest control company is also there. Actually they are the owners and sponsors of the insect museum. Who knew?

Exotic roach

Scorpion glowing in blacklight

Touching the millipede

Touching the tarantula

So… I went in straight into a small show and tell that was happening as we arrived. The guy in charge of the insects went through all groups so kids could touch the creatures he was showing off. Some kids ran away from everything. Not me! Although I was not into touching the exotic roach, or the scorpion (which glow under blacklight, way cool!), I was ok with touching the millipede (after all I had touched worms thanks to my teacher)… but I was especially thrilled to touch the spider! It was an immediate yes when Mommy asked me if I wanted to touch it. So soft! So beautiful! I really liked the tarantula, I hope Mommy can get me one as a pet.

Aedes Aegypti: Presente!

After the show and tell we went on to explore the museum. As we got into the insects “theory” and charts I took a break from it all with a nice catnap. Daddy was drooling over all the weird insects in there. I woke up just in time as we arrived at the butterfly exhibit area. Now that’s what I love! Wow! So many butterflies! I had not thought about how they change colors depending on where on earth they are… Butterflies from the desert have colors from brown hues. The ones from the rainforests are so vivid and colorful! I was sad that there were no live butterflies, but Mommy told me that for live butterflies we need to visit a butterfly nursery… and she happens to know of one. So maybe that will be our next adventure!

Ant farm

Bee hive

We loved the insect museum. Daddy said we have to go back but earlier so I get to enjoy everything, maybe getting a science tour so I get a class about it all. That should be interesting. All this past two weeks I’ve been learning about the butterfly life cycle… and that adds up to what I already learned about bees and ants and worms! I have some amazing things to tell to my teacher on Monday! Now, back to my scheduled programming…

Mother's Day, Dentist, & Amanda

noreply@blogger.com (Vierna) — Fri, 18 May 2012 08:18:00 +0000

I may be a bit late, but Happy Mother's Day to all moms all over the world! I know that Mommy had a nice day. I gave her a present I made myself, a nice set of flowers that even smelled like perfume, and a nice card promising to be better and put my best effort in all I do. Yup, I even promised to not roll my eyes all the time and be nicer. She was very happy about it all.

Last week I also had a visit from... My Tooth Fairy! And she left me a book, along with $5 bucks! I really liked the book as it explained why in blazes she takes away the tooth that she demands us to put under our pillow. Awesome!

This week I had my third dentist appointment, this time in a new place. Kudos to the staff at Dental Kidz, they rock! I loved the service. No cavities, my teeth were cleaned, and I had a good time. I must return within 3 months to give my gums a second look and maybe an x-ray. Since it was my first visit there they did not want to scare me away. Ah, if they only knew... I have been through so many things, that appointment was a breeze!

In other news, I hear that I may finally have a new speech language therapist soon. About time! It's been 3 months, which is unbelievable! I'm looking forward to seeing what new insight comes my way. Also, the school system will allow me to go to the Museum's Camp Jr during Summer. I was thrilled with this news! Alas, Mommy won't have to be trying to figure out how to get funding for that. Now she can have time to get funding for other things that I need.

I heard something about hippotherapy and aquatic therapy on the horizon... I hope that the people that make decisions see that I need them to strengthen my lungs and to better my posture. With those therapies I can improve the amount of time that I remain seated, and even improve at which degrees I sit (I cannot sit straight yet, and just doing that is a big goal). Who knows, it would be awesome if I could start it and go back to my 2-5 hours of being without bipap. I miss my nose breaks (my nose hurts sometimes because of the constant pressure of the mask, sometimes it is too tight, other times it is a positioning thing... there's never a perfect situation with the mask).

My stander and my new power wheelchair are still in process... of being completed so the requests are finally sent to insurance... The key word there is “in process”. Oh my! I've been hearing about this for weeks, and it is all still in process? Erm, like... I need my stander and a new chair right now! I've outgrown everything! I wish I could become a priority for the people in charge of making things happen. I know there are other kids out there in need of services as well, but come on. I have been patient enough. And I really need my basic equipment. I need to stand to keep my body functions fine tuned, and I need a new wheelchair because I need to get off my bed and go places being safe and as independent as possible. So people, no more razzle dazzle. Just move your booties and send in the paperwork! Gosh... at this pace, I'm going to get my stuff in Christmas and only if I am lucky!

So... Life keeps on being hectic but good. Having OT Gail around most of the week makes things fun. I really look forward to all her crazy projects. It is almost as if she were competing with Mr. Farina for creativity, they both have something new and exciting for me to learn and for me to do. And PT Marda keeps my legs and toes moving! Daddy made sure I am back on track in my daily cycle “riding”. And Mommy is revamping my daily care handbook, as it is a bit outdated (a bit as it is from 2009). Yup, it needs new juicy details from all the things that now I do during my day. And all is not for the faint of heart! My little sister has pitched in to the big affair of being in my room... of course all she wants is to watch what I am watching and then sing along to annoy me... but as long as she doesn't reach for my nasal mask all is well. I can't complain. The days keep zooming away, and everyday has something new to offer me... Every day I open my eyes and I see many reasons to smize. And I wouldn't have it any other way!

God: Thank you for surrounding me with the right people, and for allowing just what is right for me to come to me. I trust Your big design. Work through me so that every life that I touch gets Your magic. This time I also have to ask You to give plenty of Your special love to the family of my little friend Amanda. I know she now dances and runs and flies all around You in Heaven, but still... sometimes knowing is not enough. Give my love to Amanda, as I am sending big warm hugs and many kisses to her. Thank you God for all Your blessings, especially for allowing me to bring so much joy to my family. Thank You for all the miracles You bring into my life, every second. Amen.

Abilities Expo, Starlight & Avery

noreply@blogger.com (Vierna) — Sun, 06 May 2012 22:36:00 +0000

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

noreply@blogger.com (Vierna) — Thu, 03 May 2012 05:34:00 +0000

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

noreply@blogger.com (Vierna) — Sun, 22 Apr 2012 22:45:00 +0000

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

noreply@blogger.com (Vierna) — Wed, 11 Apr 2012 04:36:00 +0000

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!

noreply@blogger.com (Vierna) — Wed, 11 Apr 2012 01:56:00 +0000

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

noreply@blogger.com (Vierna) — Tue, 03 Apr 2012 16:18:00 +0000

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!

noreply@blogger.com (Vierna) — Sat, 31 Mar 2012 03:53:00 +0000

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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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MaW First Visit!

noreply@blogger.com (Vierna) — Sun, 25 Mar 2012 21:48:00 +0000

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.

Positive Possibilities

noreply@blogger.com (Vierna) — Tue, 13 Mar 2012 21:34:00 +0000

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!

MAKE A WISH
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!

THANK YOU GWENDELYN STRONG FOUNDATION!
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!

MEETING MARY!

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!

POWER WHEELCHAIR: MISSION STARTED
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).

MORE THERAPIES ON THE HORIZON!
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!

IN CONCLUSION

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!

GOD
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.

ActiveCycle, Figit Friend and MaW

noreply@blogger.com (Vierna) — Fri, 24 Feb 2012 03:59:00 +0000

Wow! February is almost over, and the excitement never stops! My parental units keep looking for solutions for me, and thanks to other families they came upon the ActivCycle. This little thinguie is automatic and should make my legs rotate as if I were riding a bike! All at a slower pace, of course. What should be the benefits? Basically this is almost basic training for the big gun: the MotoMed. The benefits of such a physical therapy machine are many:Greater flexibility of muscles, tendons, ligaments and joints; Improved circulation, digestion and metabolism; Reduced fluid retention, swelling and cramping; Lower blood pressure; Reduced osteoporosis; and self confidence, improve mental, health and reduce pain. But enough with the PT lesson, on with the show!

As you can see here Daddy already put on my AFO on my left foot. My right foot is ready for the task...

Here Daddy is finishing putting my right AFO. These are very important to help keep my feet and ankles. For those who do not know, AFOs (Ankle-Foot Orthosis) are externally applied and intended to control position and motion of the ankle, compensate for weakness, or correct deformities.They control the ankle directly, and can be designed to control the knee joint indirectly as well. AFOs can be used to support wasted limbs, or to position a limb with contracted muscles into a more normal position. They are also used to immobilize the ankle and lower leg in the presence of arthritis or fracture, and to correct foot drop.

So, after my AFOs are on, Daddy places my foot on the pedals of the Activcycle. Mommy put industrial velcro on the pedal and the AFO so my foot stays put. No slipping here! Daddy makes sure I am well stuck to the pedal and places the blue pedal strip over the AFO.

So there you have it. Both feet are well strapped, and then Daddy turns on the machine. He monitors my hips as I have very mild displacement and must be watched closely. The school PT recommended that I begin with 5 minutes and then go up 5 minutes at a time. Sounds good to me! Here's a video of my 5 minute session. Today was Day 3. Loving riding this!

So far this has been the second main excitement of this week. Mommy and Daddy are looking for other PT options: Aquatic therapy (formal PT in the pool, something we kinda did during Summer in my apartment's inflatable pool... It is a pity that we can't keep the pool filled all year long... We need the living room for other stuff) and Hippo Therapy (therapy using specially trained horses). It is all very exciting, so I am crossing fingers so one or both of these therapies can come true!

The first excitement came in on Sunday, when Mommy finished adapting a Figit Friend for me. Godfather Steve sent me the purple Figit for Valentine's Day (codename Willa), and Mommy followed a tutorial so I could actually play with it. Next on her to-do list is a creating a pageset so my "voice" from my communication device can give commands to Willa (I think she did a prototype, but my Tobii is on repair so I'll have to wait a bit to try that). This is so cool! Here's a video of me playing with Willa using my 2grams switch:

Ending the week of excitement, Mommy re-submitted the form for Make a Wish, so I should expect their contact soon. I'm glad Mommy did that, her first form got lost in cyberspace. I can't wait for what can come true! Gotta start thinking hard for a big wish!

GOD: Thanks for keeping me healthy, and for everything You bring me. Thanks for helping my friends, for allowing so much healing all around me! Allow me to keep on being an instrument of Your Peace and of Your Love. Always in your hands, always grateful, always believing. Amen.

Me and My Gadgets

noreply@blogger.com (Vierna) — Tue, 07 Feb 2012 07:40:00 +0000

Enjoy some videos of your favorite DIVA (yes, me of course) using tech gadgets to have fun and to communicate:

Using my spanking new 2Grams switch to play Whack-A-Mole

Using my proximity switch to play with my beloved Kai-Lan Adapted Doll

Using ALL my tech stuff!
This is way cool. I'm using my 2G switch to activate my WonderPets flyboat. I'm also using my TobiiP10 communication device to talk. Over my head, the remote control solar system spins (now I can control it with my Tobii). I can do all that while watching my favorite show. Life is good! Can you tell this was a great day?

Last, but not least, Have a small tour of my kingdom!

First Month of the Year

noreply@blogger.com (Vierna) — Sun, 22 Jan 2012 23:59:00 +0000

This year began with me at the four star hotel, then a big welcome home followed by the Three Wise Kings leaving me many presents under our Christmas tree! Not a bad start at all, considering that usually this time of the year I am in deep fear of getting beyond sick because of extreme crazy weather. This year the snow took its time to arrive, and the cold behaved until last week… My adventures have been mild, but not uneventful.

The first weekend of the year began with news that I would not have my private OT until some paperwork gets done… This is because now each time you get to the hospital then services stop. When you get out, services must be restarted (noticed not renewed), so I need a prescription so an evaluation nurse comes out to see me so she can give the go to my OT services… This is a process that is new to us, and that no one had bothered to let us know. So… I did not have my private OT then, and it’s been two weeks since that… Paperwork is still stuck somewhere. The funny thing is Mommy received the insurance service approval on Friday, and it had the 4 sessions for this month. Things that makes you go hmmm… Hopefully the private OT thinguie will be solved so it all is restarted by February’s beginning.

Talking about OTs… Vacation from school ended, and services from my school PT, SLP and OT are back. The new OT has helped me complete some crafts and has set some goals that run towards my being more independent and proactive in my own personal care. Whoa! Now, that sounds like mayor goals! I am very excited to see how the goals will come true. The most immediate thing is getting me to control my index and thumb fingers enough to get to open a toothpaste cap. May seem like such a simple thing to many people, but that is something that would mean so much in matters of the things I can do by myself. I look forward to work towards this big goal. Imagine, I’ll be able to help my morning and afternoon nurse with my own oral care! That would be way cool!

My SLP is drilling me with the communication screens… Talk about killing me with kindness! Well, not so kind… I understand why he gets so pushy, but the screens (and what I am asked to do) bore me so much! I know what they have… And I use it all when it suits me. I don’t like being asked twice for things, and I don’t like yes or no questions. I am trying to go along with it, but it is all very draining. At least the last couple of sessions integrated playing with my favorite Kai-Lan toys. I’m trying to lighten up… and get over it. I know how frustrated people get when they don’t understand what I want… I just wish they paid more attention to the details about me, so they would see I am not that complicated. I just get bored easily. Mommy added some daily choices so I can go beyond the main screen to the things I want or need. That should make it easier on me… it is much better to say exactly what toy, movie or game I want. I missed that. We’ll just use the simple task screens for the sessions, to keep them focused. I’m more open to this plan… My love for the Tobii is renewed. I will do my best to answer “on demand” even if I hate it… I pinky promise…

My PT has been coming as usual, exercising and ranging my whole body. Arms move, legs move… She makes me push and move my feet and toes. She makes me move my hands and arms, and is training my fingers to thumb-wrestle. I did not see the point of that in the beginning, but after using the joystick for the power wheelchair demo I have a good idea of where she is heading. My thumb and index fingers are moving and wiggling like crazy! And I am controlling much better whenever I make selections with my proximity switch (especially when it is positioned so I see the activation light… I gotta have my feedback).

On Monday the 9th I had an appointment for evaluation to use the Motomed Gracile PT machine. We went to Children’s Specialized for that, and although we are not happy about the Rehab people, this PT from the upper level was outstanding with me (her name is Sarah). She was not afraid of moving me or touch me, and assessed every inch of my body. I was pretty excited about it all, but did not expect to try the machine that day. I guess that when I heard that I was going to try it I kinda got a bit over the edge. Seems I aspirated and it all caused one of my typical RT episode scenes (which are common to me and my parents, but can scare the beejizes out of anyone else watching)... So, after the episode I had to stay reclined and go home, Mommy & Daddy would not put me high in the wheelchair after such a thing, and I needed to be coughalated and nebulized as soon as possible. So… there went the chance to try the Motomed before the snow and cold weather hit strongly. I knew that going to try something after being a whole week in the hospital was not a good idea, but oh well… “Foolish Hobbits”… We’ll return by May… hopefully… And that story shall continue…

The rest of the week was uneventful in matters of going out. I had a GI appointment but it was changed as snow showers were expected. My numbers (oxygenation and heart rate) have been a bit erratic and variable just as the weather and Mommy. All in all I have been well enough to complete my school projects (especially DeedeeLand, my personal version of CandyLand) and to get deep into the alphabet and the numbers and books and Martin Luther King, Jr. Mommy and Daddy got in contact with the social worker from our housing and will try to get a bigger apartment so I can have the mandatory space I need and my sister can get her own space (sardine living is not recommended at all). And my EIP meeting was cancelled as everyone had something better to do… I mean, everyone was tied up with something. It was rescheduled for next week…
Bear with my sense of humor.

The collar and headrest saga continues… Now, the seating company seems to have misplaced or lost the order… Apparently it arrived, but no one has found it. If I were not a nice girl I would say something naughty, but I won’t hinder my chances with Santa for next Christmas. On happier news, the ATP from that company and the guy from Permobil should come see me next Thursday for another power wheelchair assessment. Please cross fingers so no weird episode happens and spoils the assessment!

Mommy also contacted our new Department of Education case manager (the social worker) asking for ATP assessment. It came to her attention that I should be assessed by an ATP twice a month and that has not happened since classes began (all this time). Mommy also contacted Advancing Opportunities to see if they can assist me with that… A new saga has begun… Perhaps this will also take care of the video-conference I should be doing with the school…

Mommy contacted the creator of the exoskeleton for arms movement. He required a video of me seated in my wheelchair and moving/ranging my arms to see their flexibility. So, that video is also a next step to see if I could be a candidate for using the WREX from Jaeco Orthopedics. Cool stuff that could help me do a bit more of daily normal stuff… on my own. With my being sick I have not been able to show my ability yet, but hopefully next week I’ll be able to finally do it and send it to him.

Last but not least, Mommy submitted a request for Make A Wish, New Jersey chapter. I am all for Mulan and Pocahontas (my heroes, my strong ladies!), so I have high hopes for all that THAT could bring!

Is my life exciting, or what?

GOD: Thank you for everything You do for me. Let me be an instrument of Your Peace and of Your Love. Do with my life as You will, I trust the big plan that You have for me. Thank you for surrounding me with just the right people and for keeping me alive and well. Help me soar, and help me help others soar. Amen.

Happy Three Kings Day!

noreply@blogger.com (Vierna) — Sat, 07 Jan 2012 04:00:00 +0000

Feliz Dia de Reyes! I celebrated this very special Hispanic tradition at home. Yes, I spent 5 days at PICU but thanks to so many prayers and proactive actions I was sent home early in the week. On Monday I got a special visit, Pastor Bill and a missionary also named Bill. They had tried to see me at home, but found just Mommy getting ready to come to the hospital. It was nice to have a visitor... All these years I've never had a visitor (besides my first hospital stay here, when I met Ethan and Emily). They brought me two books, which I devoured. On Tuesday Nurse Mashaela came to see me, staying for a while so I got to laugh a bit with her silliness. After she went away, Nurse Marie also came to visit me, and she got me two balloons! I was so excited about them! She got just in time to see me get ready to go home. It was cool to roll around the hospital with the balloons on my hands. Mommy was very concerned about the time we went home (6:00pm) as the temperature was hovering on 17 degrees... I was wrapped up like a burrito, rolled into the van, and then hurried home. I had a quiet night, and as soon as next day I was up for my respiratory therapy, school class, and even occupational therapy. Everyone was praising me for my focused attention and happy disposition. Yes, I missed this all very much.

I have been in special respiratory therapies mode to make certain that I don't get sick again. Nebulizers each 8 hours using Duoneb, along with CPT and cough assist. Today I went to see my pediatrician for my second shot of Synagis. Everyone was relieved that the day was warmer (around the 50's), so I went to my appointment, and then went home without any other events. In this case no news is good news.

As I arrived home, I noticed that the water bowl and the rice that I left last night for the camels of the Three Kings were almost empty! I thought they would not eat the rice, but I guess they were that hungry! At first glance I saw no gifts, but then as Mommy turned on the light I noticed a blue sack almost hidden between the sofa and the tree... It was filled with gifts for Kali and me! That was awesome! Kali did not waste time and immediately grabbed two gifts (never mind that one was mine), doing a happy Ewok dance of her own.

I guess that I got so excited that I almost choked myself. I had to go into my bedroom for safety, but Mommy and Daddy brought everything to my bed so I could open my presents. I was upset as I wanted to stay in the living room to open gifts with my sister... But then I say she was already in my room, just playing with some cars and paying attention to what I was doing... Seems that I am the biggest entertainment she has... Sometimes THAT makes me wonder... I calmed down, and the gifts reveal began!

This definitively made my day! Jewelry, silly warm socks, t-shirts, table games (family game nights, hint hint), Squinkies (this time Beauty & the Beast for expanding my collection), pop-up books (yay!), coloring books with stickers, singing Jasmine (wow and gasp, very cute), my very own remote control solar system (I think Santa and the Kings had something in mind... Santa brought me a video of a field trip to the planets, and now I get this... Hmmm), a Kailan bubble blower (I'm wary of bubbles but love the dragon), and a talking Kailan (these last two adapted so I can play with them on my own! And the talking Kailan... Hypnotized! Mesmerized! This deserved an awesome! Loved her so much I coulnd't stop playing with her until more than half an hour, and only because I had not watched TV for the whole day!!!).

Wow! So many cool things, all to keep me quite entertained for a long time! I had caution with the bubble blower, and I discovered that I could use it to play with my sister... I trigger it, blow... and she catches the bubbles. It works perfectly (that way she stays away from my mask). Mommy mentioned adapting the solar system's control so I can use it with my switches... Whatever, I know I will love watching it spin. Thanks to my godmother for that one! I promise I'll share it with Kali! And thanks to my Grandma Millie, especially for the bling and the bed covers she made for me.

Mommy noted that she got a note from the Tree Kings saying some special Bible videos were on the way, along with some switches for my adapted stuff. They were in such a hurry, and misplaced them in another sack a bit far from us. They said they'll deliver the missing stuff soon, to have patience and hope. They said they will probably mail things... taking the camels on such long walks too soon may dehydrate them. I didn't get upset at that. I used everything with my proximity switch, and played with everything else. I watched Dora's Three Kings Day special twice. I am happy with everything I have, but most of all I am happy I am home.

Being in the hospital made me re-evaluate all things that surrounds me... so many things that not many people have. I have a family that will do anything for me, anything to make sure I am well and healthy and comfortable and happy and divalicious. Yes, it is annoying how Mommy messes with my hair in the mornings... but I really missed it... It is a drag to get up early for the mandatory respiratory therapy, but it is what has kept me well and alive and strong for so long. My classes are demanding, but thanks to them I have learned discipline and how to be focused. My therapists keep me awake when I want to rest, but show me the value of perseverance and being steadfast. Strangers show me the value of what really matters, being open and friendly and helping expecting nothing in return...

I have many things to be grateful for. God has surrounded me with just the right people to help me reach goals and dreams, and to help me complete the big master plan that He has written about my life. I get mad, I throw tantrums... but I do acknowledge what is important is invicible to the eyes, and I know that in the end no matter what you do Love is the way. May this new year bring many blessings to my life... change towards something better, change towards certainty and bliss, change towards growth and amazement.

Thank you God for the miracle of life, for family and friends. Keep on carrying me in Your arms whenever I need You, keep on smiling whenever I do the right thing. Grant healing and happiness to so many that are sick and in despair right now. Grant us all peace, serenity, courage, and wisdom. Amen

OUR THREE KINGS DAY VIDEO:

Day 4 at the Hospital

noreply@blogger.com (Vierna) — Mon, 02 Jan 2012 16:53:00 +0000

Still getting respiratory treatments/therapy every 4 hours. Medicines will be decreased to every 8 hours as I was fairly stable yesterday afternoon and night (these are the nebulizer stuff: albuterol, mucomyst). Feeling very tired, but putting up a good face. I hope I can be home for 3 Kings Day, but it all depends on how fast I can recover & heal. I miss being home so much!

My little sister makes mommy's and daddy's shift change quite noisy. At least she could stay around as there are not many kids at PICU, just 3 more. It was sad not spending New Year's Eve with my whole family... Mommy stayed the night. For the sake of safety, daddy stayed at home with my sister. Legend says that he slept through the night... I am glad that even if things have been rough good news and hope are around always. God keeps surrounding me with His Love and the love of so many people! I foresee this new year will be one of wonder, and even greater miracles.

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. JEREMIAH 29:11

In The Hospital

noreply@blogger.com (Vierna) — Fri, 30 Dec 2011 23:12:00 +0000

Since I've been sick for 10 days and the antibiotic that my doctor prescribed didn't make me better, Daddy took me to the emergency room today. There they took X-ray, blood samples and sputum sample,and the outcome was that my left lung has something. It was not clear if it is a ball of mucus in the lower part, or if I had atelestasia in there (partial lung collapse). So, without much thought, I was admitted to PICU.

I am at UMDNJ Hospital as usual, Level G room 416 (well, it has been more than 2 years since my last visit but the doctors and most staff are the same... even got same room). I guess this year's end will take place in the big hotel... I hope that I can be home soon. I don't like being separated from all my family... I'm even missing my little sis Kali... May this lung heal so I can get back on track with my normal life!

Our Night Before Christmas

noreply@blogger.com (Vierna) — Tue, 27 Dec 2011 08:36:00 +0000

Merry Christmas!

noreply@blogger.com (Vierna) — Tue, 27 Dec 2011 05:16:00 +0000

This has been quite a week! I have been sick since last Monday, so Mommy and Daddy have been running the house like a hospital. Daddy has been staying up all night at my side, making sure that I get my medicines and nebulizing me and doing CPT and coughs as necessary. It was rough... I almost made it to the hospital... But, prayers and diligence did the trick, and I really thank God for allowing me to spend another Christmas at home with my beloved family. I am still under antibiotics, and getting my respiratory therapy and care as needed, but it is not as bad as I have been before (knock on wood). On Friday morning I had a visit from the Tooth Fairy! I lost my tooth, literally... but she accepted the card I made! There is always a silver lining in dark clouds.

The night before Christmas was filled with diligent vigilance from Daddy. My new friends from the nearby church visited me and made my night special. I also watched Santa's video, where he made sure to let me know he was going to visit me. I wanted to see him again, but I fall asleep... I guess the Aquarium memory will do (along with his video email!). I am just glad I made it to the good list.

So... The big day arrived. After my mandatory routine, and getting all glammed up, Daddy took me to the living room so I could see myself what went on. Wow! I could not believe my eyes! Santa brought many gifts, sent by so many people who love me so much! Here is a picture of me under the Christmas tree...
I was so overwhelmed! I did not expect so much!

So you can guess that we all had a very special day. My sister Kali had a blast, and Mommy and Daddy fussed with us until we fell asleep... What a day! But don't just take my word for it, check out the pictures. Enjoy!

Staring at the camera just to make Mommy happy
My sister Kali ready for Christmas (and for opening gifts!)

Mommy prepared this yummy ham! I only tasted the syrup, but Daddy was very happy with it!

A Flying Froggy game to play with Mom & Dad!
Shape thinguies to cut play doug and real dough!

Wonder Pets! And a Squinkies video game! From Kat & Kev
Divalicious hair stuff from Auntie Edni!

And nail stuff to match all my outfits!
A movie "Field Trip to the Planets". I foresee some planetary action in my future...

Animal Crafts from OT Roze!
Giggly Kailan! This on is bigger than my old Kailan! I really love that she is wearing purple (my favorite color!)

Crayola Princesses Coloring pad, from OT Gail!
Hugging Cow from Nurse Marie! This is perfect for my wheelchair (so my hands are comfy and in place)
There was an Old Lady who Swallowed a Fly! Pop-up book. I love this story, it's so silly!
T'was the Night Before Xmas! This is a gorgeous Pop-up book!
Wide-mouthed Frog pop-up book!
Clothing from my Auntie Edni

Pocahontas arts & crafts, from my OT Roze!

Clothing from Granny & Great Granny

Squinkies!

From my Godfather Steve, Singing Rapunzel! Awesome!
Playing my singing Rapunzel! I can do this on my own, LOVE it!
Singing Mulan! Now THIS was absolutely AWESOME! Mulan is my favorite princess, along with Pocahontas.

Singing Pocahontas! I am floored!
Me & Mommy

With my family
Looking Gorgeous!

Sleeping after my dolls were placed at my side

Squinkies stuff

Surrounded by my stuff...

And more stuff...

And more stuff

My sister sleeping with her favorite people

And so a perfect Christmas Day ends... And I am so grateful for so many things that I received, in special the big blessing of being loved, and being here. So many people take for granted every breath they take here in Earth... I don't. And I know that my family don't. And I am glad that everyone that cares for me don't. I am very lucky to feel love every second, to witness love every time I blink. God has been good to me, giving me a family that is so special and with whom I know I can soar. Baby Jesus is born among us every year, and we celebrate Him as He is the Greatest Miracle of All, the greatest gift of Love.

GOD:
Thank you for my family, for they are always there when I need them and they are always there to be silly with me and patient with me as well... I know I m not easy, I try to get a hold on my tantrums and I always want to get things my way... I am really trying to be better... I know everyone around me love me and want the best for me. Thank you for keeping the right people around me. Thank you for a loving home, and for taking care of all my needs. Thank you for carrying me through the hard times, for sending your angels to help me when I am ill or in need of good advise... Thank you for so many blessings, especially the gift of life. May I be able to express my love for You so You are proud of me. Make of me an instrument of Your peace and of Your will. May I touch lives and change them forever, in Your name. May I live for You, forever.

I only have one special request. May all who need You find You, and may they find not what they want but what they need. I know You always have a big plan... bigger than anything we can understand... a perfect plan. I trust You. Carry all of us in your hands... And forgive all our silliness... Amen.

Merry Christmas! And a Happy New Year!

Them Bones

noreply@blogger.com (Vierna) — Sun, 18 Dec 2011 06:49:00 +0000

Letter from Santa!

noreply@blogger.com (Vierna) — Fri, 16 Dec 2011 17:10:00 +0000

Meeting Scuba Santa at the Acuarium!

noreply@blogger.com (Vierna) — Wed, 14 Dec 2011 21:15:00 +0000

On Tuesday, we made it to the Adventure Aquarium at Camden, and we all had a blast! Since I would not have class on Tuesday, we made the perfect comeback after two years! And the bonus was that I got to meet Santa! Can you believe this? That was awesome! He was scuba diving with an elf in the shark tank! Talk about being a daredevil! This is a day I will never forget! Here is the pictography, so you all can share my day! Enjoy!

Entering the coral reef

Life beneath a "mangle" (how much I miss home...)

Tropical fishies

Animals in the mangrove

Shark maws

School of fishies

Another coral reef shot

Willie the Alligator (16 feet long, 550 pounds)

Me touching a starfish

Me and Daddy

Santa saying hi to us!

Santa and Elf scuba diving

Kali enjoys the show

The shark tank theater

Santa's chair

With Rudolph the Red Nosed Reindeer (who happens to be very polite!)

Birds...

Two troublesome hippos

Kali loved the hippo's fishies

The sea is an immense dessert where man is never alone

Kali stalking more fishies

Jellyfishes

Mommy and Kali in awe

Shark ate Kali and Daddy...

Family at the shark tunnel

Daddy enjoying the sharks

Friendly sharks crossing

Kali ate food...

Me with Mommy while eating my lunch

Kali is done... Time to go home.

It was cold... But what a beautiful day!

Nurse Mashaelia smiling and ready to suction!

Philly in the back

Me, traveling in style! And more wrapped than a burrito!

Xmas Breezes

noreply@blogger.com (Vierna) — Tue, 13 Dec 2011 03:54:00 +0000

Christmas is here, and you can feel the ambience shifting from hurried gloomy to laughing nothings and glee. Not that I am complaining... in the middle of so much chaos and daily mayhem is good to see that something can be strong enough to make people lighten up at least for a while.

Last week I had my synagis shot and pneumonia shot. Hopefully that will help me avoid the dreaded RSV and sicknesses that go along with Winter season for so many kids... and that can be fatal to kids with my condition. Some of my peers have been sending many messages regarding how to ward off these, prevention being the number one concern among the SMA community. It is something not to be taken lightly... a simple cold can kill us. I understand how serious things are, and so I try my best to stay away from the cooties. By now I only have two constant nurses, and my three constant therapists. All know the rigors of the privilege to be in my presence!

I am happy to announce that I finally have an official OT from the Department of Education. She did the meet and greet on Friday and we really expect big things out of her as she comes in blooming with ideas and perspectives. If this works out I will really be able to say I have the perfect team that will make me soar. Right now I have excellence at my side: my teacher, my PT, and my SLP. I'm looking forward to fun and even more growth. I am also happy to announce that I was finally approved a new headrest and collar. After almost two years of so much struggle, I hope that before the end of the year I can finally have the proper upper support that I need. Mommy got the call on Thursday afternoon. One battle down... Many others on the list, but at least I'll take a moment to do a happy dance over a sombrero. Yay!

During the past week I've also been visited by some new friends from a nearby church. The leading pastor passed by as they held an activity on Saturday and they were inviting families from the community. So, they knocked in our door and then they met me. Last Saturday they passed by with one of the activity's photographers so I could be part of the whole thing from home. I really appreciated all the attention, and all the good vibes. So many people pray for me! And so many people help me, one way or another... God keeps on holding me tight, looking out for me and my family.

Today I did not have class so I enjoyed the day revisiting Nemo and Ariel. I'm happy and I am wary of all the special things happening around me. Mommy keeps on being busy writing and calling people, and Daddy keeps on with orientations and straightening out paperwork. I don't understand much of what they do, but I now it gets tough and all they do they do for my sister Kali and for me. And as long as we are all together, everything is just fine.

So... With pasteles (my RT brought some for Mommy and Daddy), some pumpkin creations and plenty of Christmas music from my little island (Mommy is a sucker for the Tuna de Cayey group) I can definitively say I look forward to a week of adventure, preparation and expectation for Santa's visit, New Year's eve, and then for the Three Kings day. One of the best things of being Puertorrican is that our Christmas last until mid January! We always have so many reasons to celebrate! Me, I celebrate because I am alive and I know my dreams will come true... Mommy always tells me there's nothing I can't do. And I know she tells the truth. I have faith and belief on my side, and the right people around me.

GOD: I think always of all the kids that I know that are in the hospital, fighting for their lives! Thank you for allowing Mary to go back home, please help MJ so she can finally beat up all her cooties, and help fix Gabbie's heart so it gets strong and she can go home too. Thanks for making Ally and Stella better. Today I also ask You to give baby Sophie big kisses for me, so she keeps smiling up there in heaven. Thank you for surrounding me with love, for protecting me and my family, and for always making Your presence known in so many ways. Amen.

My Wishlists for Christmas Gifts

noreply@blogger.com (Vierna) — Mon, 05 Dec 2011 09:19:00 +0000

Yay! It's that time of the year, again! And I know Santa is checking up his list... I'm trying to make his life easier (and that of family and friends) by suggesting fun stuff that I like, and fun stuff my little sister would like. Fun stuff is found on wish lists in Amazon (listed below). This is all books, toys and dvd's.

Click on the link to reach the Wishlists:

Toys for Deedee in Amazon.com
Books for me and my sister
DVDs for me and my sister
Toys for my little sister Kali in Amazon.com

I am all about Kailan, Disney Princesses (especially Mulan, Pocahontas, Rapunzel & Belle), Disney Fairies, and arts & crafts (sequins, mosaics, beads). I love pop-up books with passion! And I am a girly-girl with attitude. Love purple, black and shocking pink... and razzle dazzle. Size 6 in clothing, 10 in shoes.

My sister loves Pocoyo, Blues Clues, Bubble Guppies and Yo Gabba Gabba. Loves orange and bright pink. Size 2T-3T in clothing, 6 in shoes.

If you want to help me with the really expensive stuff that I need for my daily care & quality of life, go to the Help Us section of this blog. It may not be fun stuff, but I do need what is listed there...

Have fun, Santa!

:)

Thanksgiving

noreply@blogger.com (Vierna) — Sun, 27 Nov 2011 22:49:00 +0000

This year we had a cozy Thanksgiving day. Mommy and Daddy prepared a cherry chocolate cheesecake and a Virginia ham with Mommy's special family heirloom recipe. From what I could smell, it was all very yummy! I just got a taste of the cherries, but it is all ok. Surviving the Tiny Terror (my little sister who has a knack for taking off my mask) is priceless.

It was a great day that ran smoothly. I spent the time watching Bubble Guppies and Pocoyo with the whole family. Mommy put up the Christmas tree and Daddy watched Kali so she would leave me alone... Sometimes too much love can really hurt!

Mommy kept on hovering over me, finishing my nails and fussing with my hair. I have to admit that I like this shimmering hairband very much. Always a diva!

My sister was very inspired by the songs about bones, and so she started joining the beat with her drum... I just wanted a bit of quiet, but... I guess that will happen when I go to my haven... I'm trying my best to be patient and follow the Golden Rule here... Bear with me!

So... Food, music, kiddie shows and much love within my small family... No complaints. I have been blessed in so many ways! I am happy. How I couldn't be? I'm surrounded by love.

God: Keep on taking care of us all. Thank you for Your blessings and for Your love. Amen!