Father's Day

I Love You Daddy!

I made this card for you

And this thinguie-holder

All I have is love

And that is more than enough

Awwww, Happy Daddy

Erm... Stop the pictures! Geesh!

All of us... Well, mostly (Kali is sleeping)

Running to get a bath

Waterbomb!!!

GOD:
Thank you for allowing me to be with my daddy. He is silly, and he always makes me laugh. He also takes good care of me... He is my best nurse ever, caregiver, guide, friend, confident, gadget guy, model, cook, personal trainer, and fashion designer in training. Please take care of him... he is very selfless and always takes care of me, and of my sister and Mommy. Protect him and let him always walk in Your grace... Let him know that although I cannot express it well, I am always there cheering for him and sending him hugs and kisses and all my love. He really is my hero, he has saved my life countless of times... and even in the face of adversity he stands strong and keeps a kind and gentle heart filled with the hope that You always pour upon us. Thank you for him, one of the greatest blessings in my life.  Amen.

Weekend Getaway & News Update

It has been quite eventful days in my household. As usual, the combination of many unfortunate events unfolds... but somehow the string of bad things end up in a big good bang! Goes to show that although you suffer a little and get unnerved a little there are also moments to enjoy a little. Nothing is simple in my life.

The past two weeks have been filled with action and drama, mainly thanks to my service providers not providing! Oh, I must confess that it has been quite entertaining listening from my bedroom to the roars coming from Mommy's cage... erm, office. Turns out that after waiting for the outcome of submissions to my insurance about my new stander and new therapies, the paperwork got lost in the Matrix. No, literally... You know that point in cyberspace where someone send a fax and the other person never gets it... but apparently someone did get it because the sender gets a receipt? Yup, that single point. So... after waiting the mandatory weeks to know if things are flowing smoothly, Mommy gets to find nothing happened... Again. May I repeat the again? This has been the story for almost three months. Long story short, now things are supposed to be "back on track". But all of this won't make anyone from the insurance people bent their ways... We have to wait for an answer in two weeks.

Never-ending story. If I were a princess in need of saving the dragon would have already have me for breakfast! To be fair, Mommy is not blaming just insurance... When she worked in "corporate America" she would call the receiver alerting him that she would send a fax, then she would send a fax, and then she would call to make sure it was received. All these people on whom I depend for my health and well being do not confirm things making a simple phone call... or sending a simple email. What a crappy service! Don't they know that by being a bit more proactive they would get their jobs done in the first try, everyone would be happy, and there would be peace in Earth? (Sigh) And so, paperwork gets lost, people get angry, and the Dark Side gets new recruits. We will see if in the end I can finally get a new stander, hippotherapy and aquatic therapy. Now I also need another power wheelchair test, to see if fiber-optics is best than mini-joystick for me to control it... I foresee that Santa may bring me a huge gift if the report says I'm nice.

Just a comment: It may not be so, but I really feel that I am not that important to these people who are supposed to help me get the tools I need. I wonder, if I were their daughter... would they move faster and more efficiently?

SOME AWESOME NEWS!

I got a notice at the beginning of June that I won a vacation getaway for my family from the Joseph Lillo SMA Foundation for Children! Yup, that's right, it will be a weekend at Virginia Beach, with all expenses paid including food, gas and doughnuts! Now how cool is that? I got very excited about this! I'll get to see the sea in person! The last time that I was near a beach I was 3 months old. And I was lucky, my little sister has never seen a beach at all! Mommy keeps dreaming of lighthouses and salty air... Daddy just wants to see us happy. And happy is an understatement! Forcefully living between four walls is not exactly fun. We make-believe we are back home in our tropical little island, camping out under a coconut tree and enjoying the sunset... Although imagination is cool, the real things beats it all!

Last Friday, June 8th I got a visit from some members of the foundation. Just so you know, this is a non-profit organization committed to raising awareness, and raising money for research and medical equipment for families affected by SMA and other disorders. Little Joseph earned his angel wings when he was just three months old because of SMA, and through this foundation his legacy of hope keeps on thanks to all who loved him dearly. I met Joseph's mom, Rose Ann (director and founder), and Monica (event coordinator) and Angelo (trustee). When they arrived I was quite asleep, but soon I woke up to witness what the fuss what about... Imagine my surprise when I realized that it all was about me! It was almost as if I had witnessed the Three Kings bearing gifts! They brought two big baskets filled with beach goodies: Towels, sun lotion, toys, goggles, shades, toys, bubbles, inflatable stuff, hats... Did I mentioned toys? So many things for Kali and me! We are going to have a blast!

I explored it all in depth after they were gone. Kali definitively started the party playing with all the sand molds. After opening everything, and realizing what I am to experience soon, I even requested my old Little Mermaid doll! Yeah, I was kinda avoiding her (her songs bear a very personal message for me...) but I think she may be back to stay, I can't deny I love her. Of course that love is enough for Pocahontas and Mulan too. There is enough of me for you all! We got a little taste of what things will be under the sun right here under our roof... Saturday and Sunday were pool time at my home! Gotta admit I love it, even if Kali annoys me so much with her happy squeals. Nothing beats being with Mommy and Daddy. Thank you so much, Joseph, for bringing more friends into my life, and for smiling upon us and helping us make more memories!

GOD:

This week I ask that You give big hugs to Gracie and Hayden, your new angels in Heaven. Give courage and peace to their families so they can keep going until they all meet again. Keep my friends and family safe and keep carrying me in Your hands so I am able to do as You want me to do. Let me be a messenger of Your love and Your peace, let me change lives the same as I have been changed by others. I am so humbled by all the blessings that You bring into my life, and grateful beyond life itself! Thank you for allowing me to experience all these things, the good that makes me want to keep going on and the bad that makes me appreciate the good even more. Thank you for always surrounding me with people who love me and help me. I look forward to all the miracles that You bring into my life everyday, at all times. Let me gain wisdom, insight, and joy from it all. Amen.

In the Pool & Chillin'

Summer is finally here! And I am so glad, because that means pool time! This year we have a new bigger pool. Love the space, now I can really move in it!My OT and PT sessions emphasizing arm, hand, fingers, legs and feet control are paying off. Sometimes the right-left commands confuse me a bit, but get it straight right away. I love being in the water, it is so relaxing! This was a perfect afternoon!



I am also spending more quality time with my little sister. Every now and then she invades my room and actually sits down to watch whatever I am watching. As long as she doesn't pull my cables, all is cool. Here's a sneak peak of one of those rare moments when she stays put and we can both share the same videos, in peace!



The past two weeks have been a bit troublesome in terms of some services... I've heard Mommy and Daddy not being too happy while speaking in the phone... Insurance woes, then therapists woes, then agencies woes... even doctors woes. Wow! Why people just don't do their job and make Earth a happier place? I know I do my job, and I always get a nice big sticker as a reward. Perhaps Mommy and Daddy should get some stickers and give them to people whenever they do a good job, so they feel as good as I do. Hmmm... I will definitively suggest this idea to Mommy.

I am happy I finally have a SLP. She is awesome. So far she makes me feel as good as my favorite teacher. I hope she gets to stay, she reminds me of all the ladies I see in the videos that I like so much (you know, the book readings... I LOVE them!). I hope that for Summer school and for Fall I keep the mighty team that I have. I am learning so much, and I am showing all the hard work that the sessions demand really pay off. I'm moving a little, but my goal is to move a lot. You will see! If God helps me (and I'm sure He always do so) I will surprise many people even more... Just watch and be my eye witnesses.

So... All in all I am counting my blessings and hoping all my plans come together. I hope that after all struggles I can finally enjoy simple happy moments and the fruits of my hard labor. Hey, I study and work hard, so I deserve some off time! I'm looking forward for the end of classes break... I heard that dinosaurs have come to NJ and are staying nearby! I also heard something about a very long bridge! And of course I am looking forward to the museum afternoons... I hope all the friends I made last year are there again. I really miss everyone.

GOD: Thank You for allowing Shannon, Carter and Mary to go back home safe and sound. Please keep them safe, and help all other kids struggling with illnesses and injuries. Thank You for all the blessings you keep sending my way. I am so humbled by the way You take care of me and my family. Thanks for showing Your love for me constantly, and for all the miracles You perform daily in my life... and in the lives of so many friends and family! You are truly amazing! Amen.

Insectropolis

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

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.