Saturday, May 19, 2012


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 “1st 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…

Friday, May 18, 2012

Mother's Day, Dentist, & Amanda

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.

Sunday, May 6, 2012

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!

Thursday, May 3, 2012


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.