Wednesday, July 29, 2009


Wow! Monday was pretty unremarkable, but Tuesday! Oh, my! Tuesday was definitively AWESOME! THIS IS SEWIOUS!!! What started out as a normal day gave some signals of some excitement around mid morning. TherapistPat and TherapistCarol called up, so it was certain they were coming. NurseMasheila gave me my morning treatment, bathed me and dressed me up with my favorite shirt, the flower power Wonderpets set that I love (It must have been an omen! Wow!). I was ready for action! My mask was off as I had enough energy for breathing on my own long enough so therapies would go well. As we awaited midday, the mail guy appeared with a box… A big, BIG box, addressed to me!!!Mommy and Daddy were puzzled, but when they read the label they started jumping around very excited. I heard them saying it was for me, but I could only peek through the curtain of my bedroom door. Then I heard some ripping, some “aww’s” and some choking up… Gosh, was it something good? Something bad? Come on, people… Even my nurse grew concerned! I beeped a bit so they would remember that, yup… I heard them… And that I was getting impatient to know what the commotion was about.

Next thing I knew Mommy came into the room with all these books… and Daddy brought in egg-shaped plush dolls… of Linny, Tuck… and Ming-Ming!!! My eyes glued to the infamous duckling, as Daddy placed them around me. He happily made funny voices, as Mommy also began showing me the books. Wow! These were no ordinary books! They had sounds! And songs! And voices! And Ming-Ming! Oh DEAR!!!! I got so excited about it! And then they showed me a card, that had my heroes on the cover. Inside, some silly cartoons, and good wishes from my friends at Little Airplane! Can you believe it? Wow! It goes with the saying that surprises come when you least expect! I was shocked! Delighted! I just couldn’t believe my eyes! It felt like Xmas all over! Thank you, guys! You’ve just "saved my day"!!! Early birthday presents! Thank you so much!!!

TherapistPat arrived just when all the goodies where being unveiled to me. So, she wasted no time, and immediately put the books to good use. I was delighted with the book with textures, and the peeking dinosaurs! Pat realized that I was really paying attention to her, unlike other sessions. Well… Duh! After she left, TherapistCarol came in. To my surprise, she brought some goodies too. She got me two adapted toys so I can keep practicing my switch skills. So I didn’t disappoint her, and practice with the switch. I think they may get the impression I preferred the fan… the truth is that with so much excitement I got hot. Yup, heart going faster, being so happy with so many new things… It is not everyday that this happens! All made me quite tired, so I needed my mask and took a “calm excitement” nap.

Here's a video of me, in the crib, surrounded by my best friends!

If you look closely, you will see my smile (yup, I can still smile on my right side, and hopefully with more intense therapy the full smile will be back soon!).

I woke up later on, after NursePeronette had arrived. She put on the Ollie’s slumber Party DVD, and we had a BLAST! These are all new episodes of my favorite friends! Mommy and Daddy joined us, and we had some fun thanks to the red shoes and the baby monster! Wow! I wish there were more days like this! Everyone around me, running to be at my side but to share happiness!

Sleeptime came with the second therapy session, and then I fell asleep. All my old friends and new friends surrounded me, guarding me… An unexpected day ended… And I feel so good, because it was a day that made all of us truly happy, forgetting worries! At least for one day! Yes, Tuesday was one GRRRRRRREAT day!

God: Thank You for letting us feel You through so many people that shares their love. Thanks for your blessings, for friends and family, for life. This time I will ask you to take care of a little friend of mine, Sarahi, who is at the hospital… She is so little, only 8 months old, yet she is so full of life! Help her, give her and her parents courage and strength of will, let them go home soon.


Sunday, July 26, 2009


It upsets me greatly that my main minion has not been updating my blog for the last two weeks. What she thinks is more important? Studying? Please! I am the most important thing, the main priority. You hear me? Me, the Deeva! How else can my followers know about my exciting life? About my great achievements! Geesh! Bad, bad, bad!

Ok, enough scolding. Let’s see where I can start… Oh, yes… I have heard some rumors about a gathering in Sunday, August 16… They think I don’t know, when in reality I am the one using my brainy powers to control what I want! Of course, shhhh! It’s a secret! I’ll let Mommyslave think she’s the one planning things out. I will have my special day celebration mainly broadcasting me live, so everyone can enjoy a bit of my charm and presence. Here in NJ, we will have a small gathering… Back at home friends and family will gather to celebrate me! Yes, the “bash” is really over there…

Hopefully a few good people may be able to come over to my NJ dwelling. Crossing my fingers so it happens… It is hard when you want to celebrate a milestone that is so important in the BIG way, but you don’t really have family and friends around you… Luckily I trust the cyber-word will save the day as it did last year. Mommy and Daddy are all about technology… well, I can see why.

The past two weeks have been… hot. When I say hot, I mean REALLY hot. I even had to stop enjoying being outside in the living room, having to be confined to my room or the other room just because they have A/C. The good thing is that I have been doing great: Great saturation, great heartrate. The bad thing is that I can’t stand the heat… I sweat too much and it’s just un-divalike. So, I do the sacrifice, stay in my crib… do my exercises from bed… play and read and watch my favorite show… Yup, getting pampered is not as easy as it sounds, really!

I’ve been getting constant nice caring pampering from NurseMashaila, NursePeronette, and NurseTiti. For the weekends I have preferred to be just with mommy and daddy, simply to take a break from so many strangers in the house and spend some cool quality time as family. Awwwww… Can you feel the love? Yup, and that’s exactly how it happens.

Therapists have been visiting at a slower pace than before… They finally acknowledged that yes, I can follow a light pointing at shapes… I know my shapes. Get it? Next step: Practicing more clicking using the mouse and computer games… There is not much advancement because I don’t have my special wheelchair yet. The good news is that I heard a rumor about a final fitting in August… so that may be my lucky day! It would be the best way to start the month! I look forward to visiting the Aquarium. I have heard so much about it, and I just love fishes! But first I need the wheelchair so I can actually go out. It is official: I outgrew completely the loaned stroller. No appropriate stroller, no adventures… When I get to the living room is mainly using the wagon. It is comfy, but a bit hard to control (when being rolled).

All in all, these have been happy days. Everyday something good and positive happens to me. Mommy has been reading to me this weird book in Spanish that has some crazy stuff. The tales are creative, but definitively out of the box. Ok, so I like them… And each story has a purpose, or tells you a creative origin for something… I learned why cats and dogs are not friends, and how a mean giant became the first mosquito. Great stuff!

Today I was going to have an outing, an actual FUN outing (the first one since we got to this place)… But the plans melted away as time passed too quickly and I need to stick to some routines for my own good. I was a bit disappointed, I wanted to see new places… but well, I forgot about everything as soon as I had my food. I actually fall asleep for a while… Guess mommy and daddy where right. I woke up in time for my night treatment… They were happy as at least someone delivered GREAT FOOD for them (and you know what mommy says: It’s all about the food!).

As my birthday approaches, I see how many blessings I have and I am humbled. People that I don’t really know care for me and pray for me. People that I know miss me and remember me all the time. My path in life started out rough… And even in the roughness I see that it all makes me stronger, that everything that has happened to me has a bigger, deeper purpose. I can make people see the miracles of everyday, wonder about them all, and be amazed by the little details that everyone else in their everyday rush misses. Once someone told me that the loveliest flower blooms in adversity. Here I am.

God: Keep walking with me, carrying me in your arms. Your breath strengthens me, brings me courage and hope. Protect everyone who touches my life, and let them see the miracles You give us everyday without expecting anything back… and let them all learn that THAT is the way for true happiness. Help so many that have no shelter, no food, no family, no friends, and no dreams. Let so many lost souls find their way. Thank you for my constant blessings. My life is yours to keep.

Monday, July 20, 2009


Our DEEVA's birthday is in August 17th, but since it is a Monday we will celebrate it on Sunday the 16th. We will do like last year. Our friends & family will gather at Auntie's place back in our homeland, Puerto Rico. We will broadcast live from our New Jersey apartment for an hour, so we are all together thanks to technology. You are invited to see our broadcast, the link will be posted on the same day before 3pm. This year the obligatory theme is... you guessed right... the Wonder Pets.

You can see the above picture/invite clearly if you click on it. :)


Wednesday, July 8, 2009


The weekend went on being uneventful. We celebrated the 4th of July dressing up for the occassion and enjoying a good dinner. We all watched some cartoons and make the most of the simplest pleasures in life that most take for granted.

This has been a positive events week. During Monday I got ready for the next busy days, resting and surrendering to some spa pampering. NursePerinette and Mommy braided my hair, so my pinkish alter ego is back. Gosh, I am really liking this look.

On Tuesday I had my appointment at the SMA Clinic in the Columbia University in New York. I dressed up, and was ready for action. The trip over there was a breeze. This time I had a wacky, crazy, fun entourage. I was quite amused with the tales about motorcycles, about people, and just enjoying the view to the road. I don't get out much, so I really like to look outside the window pane. I love the movement, and feeling the bumps of the street... It is so fun when the ambulance goes up and down! (Yes, I go everywhere in the ambulance, I need to be in a stretcher since I cannot sit down... but hey, the best part is that I get to be comfy with pillows all around me!). We arrived a bit early, so we did not have to rush too much. We went on to the 5th floor, and soon a lady assigned a room for me... big enough for all of us. Yup, I have quite an entourage... Mommy, Daddy, my nurse, the paramedics, their nurse... It is really nice having all this attention. :)

Anyway, the physician and the neurologist saw me, and then the PT and their adaptive technologies person, and the nutritionist. The pulmonologist was not there but I didn't need one (Dr.Bach saw me in April, so no biggie). We got some contacts that we need to check out along with Tracy's contacts so we explore my gaze selection possibilities. That is what will be the focus now. Everyone was happy to see me doing so well. And so, that trip went to an end. We arrived back home and we all celebrated with Popeye's chicken (ok, I celebrated with Elecare, but you get the idea). I was too tired, I had an instant nap.

Today, NurseMisheila woke me up to do the whole respiratory session and bath on time. We were expecting the ambulance again. This time we headed to Belleville, to fulfill an appointment with the ophtalmologist, Dr.Wagner. Wow! We were impressed with the fast and nice service. I had to be plugged outside, and then the assistant doctors came and surrounded me. They did everything there. I got some drops in my eyes, and everything became so blurred! They said that my eyes had been "dilated", and that my sight would be fine in a few hours... I was completely clueles... And I even got a bit worried... But Mommy and Daddy kept talking to me, so I knew I would not be in trouble. Half an hour later, the doctor arrived, checked my eyes up, and assured us that my eyes were doing fine. He mentioned later on I may be a bit near sighted, but that for now things are ok. The slight tremmors in the eyes are due to my lack of muscle control, nothing else. And with that, we went back home.

I listened to some music, watched a Princess sing along, and then had a nice nap. All this excitement is taxing, so rest is mandatory. I know the rest of the week will flow smoothly. So... easy... chilling... learning... and enjoying priceless times with my beloved family. Life is sweeeeeeeeeeeeeeeeeet!


Friday, July 3, 2009


As you may notice, my diary has a new look. Out with the hearts, in with the flower power! Things move fast in my life, so now the blog moves as fast as I do. Wheeeeeeeeee!

So... What's new? Well, I have been listening to my Wonder pets in Spanish, getting intensive flash cards learning drills, and keeping up with my daily routines. I have been making it clear that I want to be in my controlled environment (my room). The heat outside is too much when you have to do breathing workouts as I do, so I rather do everything in the comfiness of my crib.

Last week everyone came, almost at the same time. The PT, the OT, the Speech therapist... We are all trying to bring more ideas of what else can be done for me, but right now it is all stuck. I need my wheelchair so I can advance even more! Hopefully it will arrive sooner than I expect, as I can barely fit in the stroller. sometimes I need to go out in the wagon, positioning myself with a wedge on it, as the heat and the positioning doesn't help me when it comes to the stroller. I guess that one will soon return to its owner. It was great while it lasted. On the brighter side, at least the bed should arrive in August. Just in time for my birthday!

Last Thursday daddy was really upset as my MicroLight switch appeared with a broken cable. We have no idea how that happened, hopefully it can be repaired... It is ironic that just when we get the adapted computer mouse to try the switch with it, and just when we returned the loaned switch to the library, now we don't have the switch... Something always happens. Anyway, at least the mouse is here as well as game programs just for me (thanks to Tracy and her "people"). I know that the switch thing is a problem whose solution is in process. Hopefully the computer will help me communicate and learn even more, even faster.

This week Pat came with a new take on helping me increase eye gaze coordination/decision making with my eyes. She brought foamy shapes, and Mommy and Daddy put them together showcasing shapes. When placed in a board, and highlighted by a flashlight, I follow the light. Yup, Pat was pleased to see that I do pick up really fast on what I have to do. Well, I know I have many skills that they don't even suspect, but unleashing them so everyone can see I have them is the difficult task in itself. I get frustrated... But I don't give up.

I have been feeling good and very happy. I've been smiling a lot, and being attentive to my therapists and nurses. what I do enjoy most is when there is no one else around, and it is just Mommy and Daddy and me. My favorite thing is to be placed on their bed, it is so soft and comfy! Watching movies all together is so much fun! Nothing can feel as good as having their attention. And I definitively know how to do that, making them run on an instant, and then smirking. I love you Daddy! I love you Mommy!

Today, Mommy braided my hair with the pink extensions, so I'm divalicious for the weekend. Next week will have even more excitement as I'll visit the SMA center on Tuesday and then the ophtalmologist on Wednesday. I'm looking forward to the center, so I can explore more OC and PT options. What I need to plan now is an appointment to see a dentist. Those upper teeth need to be checked up.

July arrived so fast! In just one more month I will reach the 2-year milestone. It is incredible, and amazing, all the things that happened ever since I was born until now. Time is running out, and each day I can truly give testimony of being so blessed and having so much love in my life! And it all is just getting started!

God: Thank you for the gift of Life, for my ever vigilant Mommy and Daddy, for my Godparents that never forget me, for family and friends both seen and unknown. You have sent many angels to help me out, and to perform so much work in Your behalf! Please help all of those who are ill or lonely. This time I ask you to grant healing for Ally, so she and her mommy can go home soon. And for all of those who have earned their wings, grant them peace and eternal happiness rejoicing in your presence as well as grant serenity, courage and peace to the ones that stay here on Earth. Help us all become better by doing better. Take care of us, always. In You I always trust, my Good Shepherd.