Sunday, November 27, 2011


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!

Wednesday, November 23, 2011

Disney on Ice

Last Saturday I went to Disney on Ice with Mommy, Daddy, Kali and Nurse Marie. It was fun! I loved the trip, the princesses stories(of the three stories Tangled is my favorite, and to see her flying and doing so many amazing things was priceless), and the ending. Wow! Fireworks! I've seen fireworks on TV but never in person! They performed Princess & the Frog, Cinderella and Tangled. The first two were ok, but not thrilling. Now, Tangled was really magical. The flying hair, the flying act, the flying lanterns... Wow! I really hope we get to do more stuff like this, being careful of course.

Here's a peak of us during the intermission.

It is a short movie... Mommy forgot to take pictures, and Daddy has to shake less when using the cam. :P But the important thing is we had fun as a family! Yay! Another silver lining in the middle of our chaotic life.

Wednesday, November 16, 2011

My Sequined Art Project: How I do it

Some people wonder how I do my sequined projects... Here's a glimpse at what goes on "during" the making of sequined, mosaics, or any art project requiring little things to glue. Notice Mommy maneuvering my hands, obeying my mental commands!

Playing Bunny Videogame With Proximity Switch

This is one of my favorite video-games. It is called Tossing Carrots. Here you can see how I use my proximity switch while playing. Enjoy!

Permobile: 1st Trial Power Wheelchair

I went to the SMA Clinic today, and tried the Permobile powered wheelchair. I loved it! Here's what happenned...

Tuesday, November 15, 2011

Museum, Tooth Fairy & Some Suspense

Wow! Middle of the month... And it all has been crazy. Nurses don't want to come to my house thanks to our location, my insurance messing up an x-ray plea among other things, shots to keep me healthy, museum visit, and even a visit from the Tooth Fairy! Never a dull moment.

Let's start with the good and positive. Last week I went to the Newark Museum last Wednesday and saw the Seven Wonders movie. That was awesome! I loved the graphics and the details... but I especially loved the Space Seven Wonders. It felt as if I could touch the galaxies! And I love space so much! I just don't get tired of it. Before the movie I revisited the Tibet exhibit, and after the movie we explored the Science exhibit. My sister was intrigued by everything, quiet and being attentive. Mommy and Daddy paced themselves, and we all had fun. I love the museum. I wish I could come more often... This bad weather jinxes everything!

On Friday, I went to get an x-ray so my pulmo could check things up from inside out. Well... The trip was fun, as we all had to battle the wind gusts and then some... We arrived and I could not get the x-ray as now I need a referral for this... The new rules to get stuff are beyond tight with the insurance that I was forced into, and Mommy is getting tired of so much fighting for the basics that I used to get without any problems... So we all forgot about it and headed home as the day's weather was bad and the tempers worst.

During the weekend Mommy arranged some videos for me to watch, and I love them! There's a bunch of people reading books in You Tube, and they show the books and pages while they do so. I definitively enjoyed that, some reminded me of my friend Roxy. I love books. I hope Mommy takes a cue from that, too... It would be nice to have her "on demand" whenever I want to listen to her telling me a story. Hint, hint Mommy! She also meshed the old ABC videos with concepts and songs... really smart Mommy, like I was not going to notice that double agenda of yours! Hmmph!

It was the Witching Hour between Sunday and Monday when Daddy discovered something in my mouth! Actually, something getting loose in my mouth... He called for Mommy and after a small pull that I barely felt it was completely out! My first baby tooth to fall! OMG! I am getting so old! Daddy told me that the Tooth Fairy would visit me... I was so nervous! What do you wear for such an event? Then he told me I had to be asleep, with the tooth under my pillow, and then in the morning I would get a present in exchange for the tooth. And so I woke up very excited on Monday, to find out my little tooth was still there, along with $5 and a little note "For your scrapbook". Awww... How did she knew?

On Monday I also got an unexpected gift, my PT brought me a bed table. Yes! Now I can watch my movies, videos, or play video games without straining my neck! And now I have a place to play some table games too. It definitively makes things more easy, and my legs are no longer crunched between pillows, princess table, books and boxes. Oh, the sweet comfy simple pleasures in life!

And with that good thing came a bad call, something about insurance denying the headrest, collar and stroller for me... because I already have seating alternatives at home. Mommy got so angry! Me, I had to laugh at that... sitting alternatives... Well, I have my wheelchair with the wrong headrest for me that leaves my neck crooked... and the collar that floats around my thin neck (big safety placebo)... Oh, I also have the sofa and the mat in the floor... both very ergonomic you know. And I always have my bad and its thousand positions...

Sigh... Apparently the guy that came over to evaluate me saw a stroller (my baby sister's) and thought it was mine just because it is Pepto pink and black like my wheelchair... Mommy straightened the details, and hopefully things will go back in track... Can you believe that just a year ago, this same month, Mommy was arguing with a PT about the headrest and the collar... same ones... Can you believe that everyone keeps dodging the ball on the things that are very wrong with my manual wheelchair... a fact that has been ongoing for almost 3 years? So many visits to PTs... so many evaluations, so many "sending the wheelchair for update"... Ugh! We are all done with it. By now, I don't care much about the stroller, just FIX MY FRIGGIN WHEELCHAIR SO I CAN USE IT SAFELY! Headrest and collar, please? THANK YOU!

There, had to get that off my chest. People, I just don't want to break my neck, and I want to have safety while being transported in a vehicle and while I am in my wheelchair. The stroller... is an emergency needful thing, not luxury. If I don't have my wheelchair because it is in repairs (like so many times before... and it takes weeks for it to come back), then where in blazes am I supposed to be seated? You know, the bed gets tiresome after so many hours (make it years) laying on it! It is really frustrating for all of us... Mommy just hopes that we get rid off the manual wheelchair blues and my next needful thing, the power wheelchair a.k.a freedom a.k.a new legs for me, comes with everything I need so it is one less battle... within the war to actually get the power wheelchair.

Today I got ready to go to the SMA clinic and have my yearly checkup. Hopefully, the added meeting with PT and Permobile guy will be a positive one. I am really looking forward to that! Daddy has a cheat sheet to ask the right questions, and a videocam to bring home the evidence... Mommy just doesn't give him a break! Well... Wish me luck!

God: This time I give you thanks for true love. Many people go through life without knowing what that is... I live within the boundaries of true love, because of You. Thank you for such a precious gift. Amen.

Here's a video of the donated van, so you guys can see what I got. Daddy filmed this just before my first official outing on it! It took a whole month to get the paperwork together, and then wait for me to be completely healthy... and then wait for the weather to be ok... It was definitively worth the wait!

Tuesday, November 1, 2011

Princess for A Day

Who said Halloween had to be over? Well, I knew Mr. Farina will keep on telling me some Halloween stories, so I dressed up accordingly.

To everyone's surprise, I decided to be a princess. I know, that thought is weird enough, but princesses can be tough too. Looking pretty, being tough... sounds like me! Daddy glammed me up with some of the bling that I wear on special occasions: The D necklace that my friend Pat gave me for my birthday, the bracelets that my friends from the pediatrician's office gave me, the dolphins bracelet that Mashaela gave me as a birthday present... Everything was perfect!

I had the dress, and the accessories, and I was happy with that. My teacher arrived and we had fun reading some stuff... To my surprise, Daddy went out in the morning and arrived with this beautiful crown. Gotta love Daddy, he is the best! That was definitively the finishing touch!

So... Crowned and ready to charm the world, this princess decided she deserved a nice movie marathon as a reward for her flawless school action!

Carry on!