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...

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.

VIDEO ABOUT MY DONATED VAN:
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!

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!

HAPPY HALLOWEEN!

This year I am channeling Pocahontas, from my head to my toes. Halloween has been great this year! I've got some treats and I didn't have to go out in the snow! Oh yes, there is snow... There was a snow storm two days ago... The gods must be crazy, huh? Anyway, my teacher got me these awesome glow in the dark thinguies and a spooky ghost! Way cool! And my PT got me some Tink and Ariel stuff as gifts. I am having a blast! And as you can see, I am all dressed up as one of the most far-out princesses. Pocahontas is the best! I love her so! And I hear rumors that maybe Daddy will also play chief of the tribe latter on! We'll see what Mommy comes up with for her and the Tiny Terror... It's all about surprises!

These past days have been spooky. I guess we are all into the Halloween vibe... Not! Well, I've been okay, doing what I do... I discovered this video game on Internet and I am so hooked on it! It's called Turtle Crossing, and I have to make a tribal guy cross a river by jumping into turtles... I love it. I've been using my proximity switch to play it, and there has been no frustrations whatsoever (well, a bit while I find the right position but then it is all well). So now I have a balance between movies and games. There are other games, but nothing compare to the tribal guy... I go nuts for the music.


Well, besides that positive fact, the days have been spooky as I've been without my day nurse for the whole past week. No word whatsoever about what's been going on... It just seems that whenever I get attached to someone they vanish. And it seems only Mommy and Daddy and the Tiny Terror are the people immune to that spell. I never get answers, it is just what happens. And it sucks. Plain and simple, it sucks. It is very early in my life to actually try to connect the dots and understand the reasons... Really, too early. I don't understand. I keep getting hurt. People just vanish and don't think at all about how I feel. People don't even say a proper goodbye. I don't even know is it me... Why the people that makes such a big difference in my life are the ones that suddenly go away without a trace?

I am sad. I miss the people I love. Life has never been easy for me... But I know I will go on. Life goes on. There is good, and there is bad... People come in and teach lessons. They think too fast or move too fast and they do not see the important things in life... People no longer take the time to make a real friend. They trust everything that they can touch and that brings them what they want... yet they forget that what they need is mostly invisible to the eyes. I see what is wrong... I see hearts that are damaged, and need much love to recover. But they don't let themselves be healed. I see all this and it makes me sad...

I may not know much, but I know that there is something about the Golden rule that is very true as well as there is something about love and kindness that is priceless. People are fast to live life and judge and make big deals out of nothing... I look into people's eyes and I see enduring pain. I am laying in a bed, unable to move... yet I am free. When I look into people's eyes I see frozen lives, frozen hearts. It is sad. It makes me sad... I reach out but they never see me... And they keep going away.

I go deep into my thoughts, and I find peace. I don't have much, and for many people I don't do much... but I have a high regard of myself. I try to live every day following the Golden rule. I try to make my parents smile, as well as I try to make my teacher smile... my therapists... even my kitty. I hope that I also make God smile.


I am blessed. I am loved by my family and my friends. I know that somehow I make a difference and I will not be forgotten. It hurts whenever someone I love goes away, but I know that somehow I changed them forever. If little me can be a fighter and smile, so can they. That may be the gift that I give them.

So... The past days have been all about me: My feelings, my education, my assistive devices, my needs, my wants, my people, my services... Mommy and Daddy make such big fusses about everything. Life is so simple: Just love. Without expiration dates. Make someone happy... and then you will be happy too.


God: Take good care of everyone that has known me. Keep them close to Your heart and protect them always. Keep on blessing me and my family. Thank you for the few good people who never give up when it comes to me. I am deeply grateful, and always humbled. Please look out for Brianna, MJ, Tabs, Lucy, Ally and Mary, and so many other kids that are sick or have gone under the knife. Grant them health. Carry them in Your arms. Amen.

Autumn Rolls In!

I am amazed at the things good people can do. September was quite an eventful month... and I definitively learned that it does pay to be good. Bad things happen and we all wonder why, but even more good things happen at the same time... It's just that the good things are left unspoken, and only the bad things get voiced. This is so wrong! I was so sad and shocked that my van was stolen, but then someone comes in and gives us something better and more useful. I am happy that now I can have more choices in where to go as I have a secure transport and secure accessibility and safety. I have not been able to go on a first trip yet, as my parents have been handling the paperwork for the van's plates and insurance. Still, I know it is a matter of days for me to have that first trip in my new van! I can bet my first trip will have something to do with visiting either the Museum or the Zoo. And then I hope we can make the trip to visit Mr. Bussani and Mr.Zarba (my new friends from Bussani Mobility who donated the van)!


It's been exciting. Mommy has been taking care of all my affairs, making phone calls and setting words into actions. I need a new headrest and collar so my wheelchair is actually safe (gosh, I feel I sound like a broken record whenever I mention that... Yes people, the headrest and the collar is a still going issue). At least now both are in process. CMC Seating & Homecare is in charge of that, and they promised to flag these as urgent. Hopefully we'll have better luck now! This time I should get a Savant Headrest and a Headmaster Collar. I expect them to be my right fit. I know that with the Savant headrest I will have my head completely secured when traveling in the van (which definitively makes me happier). Also, a stroller is in works as well by the same company. My PT has pointed out the importance of a stroller as a backup for the wheelchair (in case it gets damaged) as well as since the wheelchair cannot go into just any terrain. I am aiming for a EasyS stroller. Fingers crossed on that matter.


Besides these items, I should be getting power chair evaluation and trials very soon. Mommy contacted vendors from Permobile and Invacare. The tech guy from CMC said he'll contact them as well to see if things could speed up. Since I have an appointment to see my medical team at the SMA Clinic in mid November, mommy contacted the Permobile guy and he will be available that day at the clinic to do my evaluation. I'm happy the first step towards real mobility and freedom has finally been scheduled! I mean, let's face it, for me time is the most precious of things and I was supposed to have a trial for power wheelchair last year! I've heard so many excuses about it! I will go on from a blank page so I only have positive things to discuss. Mommy's new motto is: “No complaining, just take action”.


I am a bit disappointed at my overall services. Now from my two nursing agencies I am down to one only. The good news is that at least now they do have another nurse besides my Teddy (Masheila). So now it is all about my Teddy and new Marie. Still, I miss my Russian connection and my crazy Texan a lot. What can I say, you are responsible for what you domesticate (said The Little Prince). I have heard so much about the area where I live being dangerous at night, and about how some people are not comfortable with my daily care. I understand so much more than people credit me for... Yes, the area is dangerous and Mommy is very unnerved by it... but we all just have to hold on and believe things will get better. We won't live here forever. Somehow, someday, we will go move to a safe house with a small backyard with roses and sunflowers... And who knows, maybe I'll be able to have a small butterfly house and we will all be able to bring mommy's cats to live with us (Mommy has 8 cats back at home in Puerto Rico, and she misses them so much)!


And about my daily care... (Sight) When will people understand that I am alive thanks to that care that they dread? It was not something mommy and daddy made up, it is something Dr. Bach created, put to practice, and it is something that works for me. I follow NIV, non-invasive care using bipap ventilator. It has its perks and its hindrances, but it is all following doctors orders. If something endangered me, Mommy and Daddy would not approve of it. I know some things are scary for whoever does not understand all the processes, but I am not scared of it. It saved my life 4 years ago. It continues to help me be healthy. And when I an sick, NIV is difficult but it works in time... with patience and diligence. My care seems easy at first glance, and I seem to be so strong and well... but I am fragile and in order for me to thrive in life I do have to go through my routines in sickness and in health, no exceptions.


I am deeply sad that I give my heart to all who get to know me, and then it gets broken each time someone departs reason or no reason. It all makes me tougher, and wiser... It all makes me appreciate those that love me so much even more! I constantly see people coming and going... I wish I had friends coming here to see me and talk to me and joke with me just because they felt like it. But... I understand. I love. With time you just learn to smile when you look at the stars because in a far away planet you know there is someone that you domesticated... hidden, far away... but there. And I know that if I feel that way, they must feel the same way about me... They must smile when they think of me. See? I understand much more than people think.


October arrived, and I'm so excited at everything my teacher, Mr. Farina, has been completing with me! Love these projects. I love dissecting the sunflower, writing my name with beans, the countdown for Halloween, the pumpkin project, the monthly calendar (of course)... We have been quite busy! I can't complain from my school time. My PT and my SLP are excellent. I just hope that they get to finally send an OT so I can get to complete more of my goals. I had also heard at the end of Summer that I was going to do some Skyping with the school, video-conferencing with the kids at the PK classroom over there... I was quite hopeful for that. I don't know why that tech project has not begun if all was setup. Ah, public services and their hicups! I still keep my hopes up. Mommy has never let me down, and I know she'll make things happen like magic. She's a witch, you know?


I completed two more projects of my own. I created a razzle-dazzle sequin under the sea seascape complete with glitter and some googly eyes. I also completed a bat to hang from my bed. I guess the legacy from the Camp at the Museum is that now I am more crafty!


I also got my last vaccine shots... Dr. V says my next vaccines should be when I turn 11. I also got my flu shots. Dr.V is not too convinced I'll get the Synagis shot, but they are waiting on insurance to see what happens. I have a dentist appointment next week. I gotta try to make all visits before our complete outings shutdown (when cold weather comes in and snow stops us until Spring). Sinus pressure is beginning... as usual. I just hope Autumn stays a bit longer, not just two more weeks!


So... That's all folks! I had action, drama, suspense... Many things running, many things to do, much love to keep giving. Life is a constant gift, a constant miracle. God is definitively the Master Artist!

I've Got A Van!

Wow! This is AMAZING! There are no other words to describe what happened today! There were many phone calls, I heard something about going out (and of course I thought "yeah, right")... And then I saw the WPIX van, and the Help Me Howard crew! Right here in our parking lot! And they were not alone, they came with our new friends from Bussani Mobility Team... They all surprised me with an adapted van!

I could not believe my eyes! Flashes from everything that we went through in our old van cluttered my head, but then I saw that someone was inside the van... And as he demonstrated how I could simply wheel my way down easily sliding out I almost screamed with joy! No more drama about the wheelchair being loose inside, or jumping in the back of the van in a carrier (true story when we were towed back at the Museum... we thought the window would not make it!). And no worrying about the snow! And the ramp... it is attached, and it is powered! I smized with my eyes as I saw a burgundy bundle of opportunities right there in front of me! All this for me! I mean, all this for my family! I see that what I read every night, about being kind and following the Golden Rule, and about the good things that happen after many hardships is true! Each day I am more humbled and more amazed with all the miracles that happen around me. All that, plus now I'm a local celebrity too!

Here's what happened, as it was broadcasted in the WPIX NY news at 5:00pm in the section Howard's Helpers. You can't miss me getting my van's keys!



So, even if I am at the beginning of carefully monitored outings and the soon to come mandatory lockdown that SMA kids get when Fall arrives and lasts until Spring decides to melt away the snow, I know that I will get to experience new adventures as I have not experienced them before. I just know that the Holidays are going to be even more special this year! All thanks to Mr. Bussani, and the good people that gave their time to help me... and my family. And of course, thanks to Howard!

And a note to God: You always go beyond and above for me. Thank you for taking care of things when my parental units reach the end of their rope. You are truly the friend that never fails.

"Do not withhold your mercy from me, O LORD; may your love and your truth always protect me."
Psalm 40:11