MERRY XMAS!!!

Well, I know, I know... I am a bit late, but hey: Better late than never. I've been quite busy, thank-u-very-much. Between practicing communication skills and my follow up appointments with doctors all around I have quite a tight schedule. I'm happy to report that I have been well, my therapists have been very diligent with me, my visit to the SMA clinic for a complete check was nice and smooth, and I've got all my shots up to date. Family and friends have been all around, through mail and email and prayers. Christmas day was very special, and we got to film some of what went on. Here are the video highlights:

DEEDEE's XMAS PART 1


DEEDEE's XMAS PART 2


Hopefully pictures speak louder than words (and yes, what you hear in the background is Jingle All the Way... you can hear the Gobernator looking for TurboMan). I am happy, and very grateful for so many blessings. I have a loving family, and people who don't forget me. I think that is what matters the most in Xmas... Love, friendship, sharing... I miss my family and godparents and friends from Puerto Rico, but I feel them inside my heart and that is what matters the most. To all who share a bit of my life: Thank you for being there, for helping me go on in my quest to defeat the SMA monster. Thank you all for bringing a smile to my face and a song to my heart.

Mashaela & Peri, I love you both so much! You guys put up with all my diva tantrums, and care for me just like family. Thanks so much for your patience and dedication, and for the help you give to Mommyslave and Daddyslave.

Sti & Maria, I never forget about my favorite godparents! And I know you both never forget about me. I thank God for you both everyday, as I know that your prayers and love have helped me a lot.

Am I lucky or what? I have 3 grannies! I have GrannyMillie, GrannieGladys and GrannieEdna! And they are all looking out for me, always. I love you all, and pray for you everyday as you all pray for me. I miss you!

Mommy & DaddySlave... What can I say... You are both my constant reason for being alive, and for being happy. You have helped me grow in many ways, and you both believe in me, and encourage me to do great things. And I know that THAT is just what I'll do, BIG THINGS, just because you are both the wind beneath my wings.

GOD: I am grateful for my life. It may not be perfect, but it is beautiful, adventurous, and inspiring in many ways. Thank you for being there for me, unconditionally, always... And for so many gifts and blessings. Thank you for so many miracles, and for being the source of so much love!

Happy Birthday Baby Jesus!

~

TRIP TO THE AQUARIUM at CAMDEN

Last week was exhausting! I went to Helen Hayes Rehab on Monday to try out another communication device, and after recuperating from that long trip to NY we all went on Wednesday to the Adventure Aquarium at Camden, NJ. Again, just like the Zoo trip, I had no idea of what was going to happen. I was surprised by an early bath by NurseMashaela, then a super feeding. Then NursePeronette appeared as well, and as I was placed in the parachute-like thinguie (the security straps for car travel) I started suspecting something big was going on. We all got in the car, me in the back flanked by Daddy and Mashaela… I am getting the feel for whenever I am in a tight setting I am going to a fun place… whenever I am in a comfy stretcher I am going to an ouchy place (doctors appointments).

Anyway… I got really worried as time passed by and nothing happened. I heard some rumors of being lost… (How can you get lost with a GPS?)… Three hours and a chicken sandwich later, we finally reached the surprise destination: The Aquarium. The fun began at the waiting line, where Daddy scared a baby. We went inside the big building, and I went into a trance. Wow! I felt as if I were back home! There was this big room with a beach setting, just like Playa Santa! And there were stingrays and fishes and jellyfishes… I loved it! I saw all the families of the cast from Finding Nemo… brothers and sisters and cousins of Dory, clown fishes in anemones, the silver fishes schools… even Bruce cousins! I loved the shark tank! And I touched a starfish! I tell you, I was trying not to blink so I wouldn’t miss anything. I didn’t fall asleep until I saw that everyone went for a burger. I knew then that the adventure was over. The trip home was long, too… I slept on the way, and then had the rest of the week to recuperate and keep replaying the whole adventure in my mind! I’ve been watching Finding Nemo and Little Mermaid non-stop for days, of course. Have I got a Sea Fever or what!

So, I can’t say the year ended without me going out for fun. Hopefully, this is a new tradition that will stick for years to come. I gotta keep away from hospitals so this keeps happening. Gotta keep praying hard, so God grant me health, so I can enjoy happy times with all of those whom I love, and who love me so much. Christmas is finally here! And I really feel it! Thank you, God, for so many blessings! Amen!

BUSY DAYS, PEOPLE & GIVING THANKS

After my trip to the Zoo I was quite beat. I used the rest of the week to catch my breath and rest. Last week I saw so many people! On Monday the new speech therapist Jamie and my old friend Tracy passed by for an assessment. Jamie got the complete recap about who I am and how is it that I’ve beat the odds so far. It was a happy evening! On Tuesday 17 I went to take a hearing test. My pediatrician wanted to make sure that I hear well… and well… I do. The trip was quick and uneventful. On Wednesday 18 there was an overload of people coming into the house. Well, mostly to see Mommy, but still… I haven’t see so many people since Thanksgiving two years ago!

On Thursday19, PT Ellen and OTMaya passed by for a brisk session. RTPeter passed by as well, with a newbie that was in training. They changed one of my ventilators and took the bad small battery backup for replacement. Finally, in the late afternoon, we got a gift basket from CPNJ, a whole Thanksgiving meal in-two-bags. Now, cooking that turkey with just a microwave will be an interesting task… Let’s see how creative can Mommy and Daddy get. On Friday 20, DTPat visited for a session of colors and shapes.. Yup, last week there was something going on every day!

During the weekend things were slowly brewing. On Sunday we heard some sounds outside and turned out that two people who were just walking by got shot! That was scary! Mommy was all nerves. On Monday, NurseMashaela could not come at all as she spent the day in the hospital thanks to an accident she had at home! I was so worried about her! I missed her so much, she is so silly… I get on her nerves sometimes, but hey… it’s just me being divalicious! She knows I love her so, and I hope she gets well soon. Not being able to breathe well is NOT funny (and believe me, I know about lung problems)!

Tomorrow is Thanksgiving, and I expect the big dress-up, pictures and food day to be great! I heard that the turkey got bathed in vinegar, and seasoned to Mommy’s taste. NursePeronnette will take care of baking it (thank God!). That one is spoiling us rotten with donuts and cheesecake! Well… mostly Mommy and Daddy, I get spoiled feeds and excellent spa baths!

On Friday I’ll get my second Flu shot along with the Synagis. And I better rest well this weekend as next week there is a kick start with the long voyage to Helen Hayes on Monday, and then to see some whales sometime during the week (if all my nurses get well). The adventures never stop… For being a quiet simple little girl I always have so many things going on around me! I live drama!
And that’s exactly how it all happened… Pretty much.

GOD: Thank You for all the blessings that I receive every single day. Thank You for taking care of me, and bringing close to me people that cares so much! Thank You for giving me more than I need, for allowing me to stay healthy and come back really fast from scary moments. Thank You for Mommy and Daddy, and my Grannies and GreatGranny, and Godparents and Nurses, and Therapists and Friends! Allow me to be an instrument of your peace, allow me to bring to the world testimony of the big miracles You do every day. Guide my life, keep me in Your hands. I ask You to take care of so many that are sick! Grant Your healing touch so many stop suffering. May Your LOVE fill every heart of whoever needs someone... Protect the homeless, protect so many kids that are abandoned, and so many who are hungry… I pray to You for all who need You, and for all who need to get to know You… May the world discover that love is the way, and You are love.
Amen.

~

TRIP TO TURTLEBACK ZOO

So, after a some fairly quick planning, we all went to the Turtle Back in NJ. It's been 2 years since we got here, and all of our outings have been medical issues, doctors appointments and hospital stays. Before Winter arrives, we put our minds to do something different, and with the help of our star supporting cast, we made it! At first I had no idea of what was going on... I just knew that Mommy and Daddy were sneaky, and that on Tuesday morning I got all dressed up... and then Daddy put a strange thinguie on me. Everyone started saying I was bunyee jumping... very funny, people! And then I was squished in the back seat of a SUV... And I mean squished! All these pillows around me were very squishy! We arrived to the Zoo in just 10 minutes, and it took a bit to figure out how to put all my gear in the wheelchair... Yup, space IS the final frontier... I have too much stuff... Thank goodness I have a strong entourage! Daddy had the task of pushing me all the way... Someone will be developing muscles soon!

Here's the front of the place. Pretty straight-forward. But inside it is a whole new world. Bushes are trimmed with animal shapes, the landscaping is perfect, the animal cages are huge, and the peacocks roam free... Mommy was wary of the peacocks... she was attacked by one back in her hometown zoo and she still has some years to recuperate from the emotional scars...

There were a few birds in display... big humongous birds! Here we see a vulture, black neck swans and parrots... but there were also the huge american eagle, crows, owl, and the big ones that are called emu. Mommy's camera was feeling funky, so she could not snap everything... but you get the idea. Me, I did some catnaps through the birds visits. You know me, if it is not too exciting, I wander away. I love danger!

And talking about danger... The white wolves were AMAZING! They are HUGE! Watching them through the glass was quite an experience! I never imagined they would be so big... and these were young... After watching them we saw a big black bear. And then we took a small break at the carrousel and snack area. Between donuts, fried chicken and egg salad it was all a great treat! Of course I joined in with my special milk, I was not gonna stay hungry!

These felines were sleeping when we got there, but both woke up staring at me, and started going back and forward all the time staring at me... Their eyes were very focused... It was quite a scary feeling. Now I know how turkeys must feel before Thanksgiving day... Mommy got nice shots of them thanks to their keen interest on the diva... Gee, thanks Mom!

In the Outback area there were some interesting horses, from big Dante (a huge warhouse who was not as huge as they can be but still was pretty impressive to us) to the pony in the picture. And there was a variety of llamas... and a bull that was emasculated and Mommy thought it was just a huge burly manly cow... LOL

Here is a rare snapshot of just the three of us! Do I make my parents look good or what? At our side is a pesky peacock that kept following us everywhere. Obviously male, seems Daddy has something to worry about... :P

And so the day got to its end. We visited the reptile area, saw some cool snakes and frogs... Mom was startled by the wounded-heart pigeons as they really look like they have a gorish wound in their throats... The zoo store had some neat plushed animals, especially peacocks. LOL And someone in our entourage got me a lovely picture frame so I will remember my first fun trip for years to come! It was a great day filled with suspense, drama, happiness, freedom, comic relief, and much hope. I can't wait to have another adventure soon! God definitively watches over me, and I can never thank Him enough for all the gifts He brings me!

~

HALLOWEEN 2009

And so one of our favorite days of the year arrived. This time we reminisce of Wonderland. Enjoy the little scrapbook of our Halloween 2009!

FLU SHOT & COMMUNICATION DEVICES TEST

Well, this week has certainly been quite eventful! I've been showing off all I can do, so hopefully more things will start moving into the right direction.

On Monday, had to visit my pediatrician to get my flu shot. The checkup was perfect, as I've been feeling well and I've been doing great. I didn't even felt the actual shot. I need to come back in a month, the day after Thanksgiving, to get a second Flu shot, and the Sinagis shot. The EMTs crew were the "fun" ones, so the whole trip both going and coming back was a smooth, funny, happy journey. I didn't have any side effects, no fever at all. Knocking on wood...

On Tuesday we had the long trip to Helen Hayes Rehab Center in NY. Now that was a long drive! I slept for a while, so when we arrived there I woke up ready for action. We didn't have to wait long, as there happened to be a vendor and he show us his demo for the Erica communication system. It was amazing to see how fast the system calibrated my eyes, as I have nystagmus (my eyes shake from time to time due to muscle weakness, but it is a faint shake). I was actually following where they were asking me to follow with my eyes, and so I ended up doing ok with this system. The SpeechTherapist for Adapted Technology arrived, and so she moved forward to trying out other communication devices. So, we moved on to Tobii.

I tried the MyTobiiP10 system. Ha! Everyone was very surprised at the speed that my eyes calibrated, plus the actual calibration is very easy. The whole system's navigation is VERY intuitive for kids. I got the hang of what I had to do quite fast. The therapist put a game of Whack-a-Mole and I kept wacking them as if there were no tomorrow! Now THAT was fun! She put a game of selecting animals to hear the sounds, and although they don't have movement I figured out that the big green button was to go back to all the animals to select the one I wanted. This was by far the best experience between them all! Mommy, daddy and NurseMasheila were too excited to see that yes I did understand what to do, and that yes I can actually follow directions. The secret is out: All this time I've been stubborn and demanding... (well, isn't that a typical toddler attitude?) I was actually complaining whenever someone changed the screens, I wanted to keep playing with specific games... There is another Tobii system that the therapist wants me to try, the Tobii C12, which they didn't have at the center, so they will call up the vendor and set a date somewhere in November. So with that settled, we moved on to the Dynavox.

The Dynavox system gave us some trouble for calibration as it needed to be position in just the right way for it to do the job (unlike Erica and Tobii that found the eyes pretty fast). This took a while, which instantly made us feel not quite comfortable about it. The navigation and layout look as a computer, good for us but not intuitive and easy for a small kid like me when compared to the other two. The system was a bit sluggish, and I couldn't get to play around with it. Maybe I'll give it another try when we go back... but so far I think Tobii the best out of all the bunch. Now Mommy and Daddy need to go in deep with each systems specifications... but that is another story.

So, it seems odd that my eyes could not be calibrated by the LC EyeGaze system. Perhaps there were other external factors, maybe the light was not enough? Or the positioning? Maybe we could explore this one again, just to be certain that we will make the right choice. One never knows, so I cannot "marry" with the Tobii idea.

Today PTEllen passed by, and Mommy and Daddy drilled her about the wheelchair and stander woes. They all dissected every inch of the wheelchair (mentally of course) and figured out what could be done to make it work. We will all wait until the horseshoe-shaped neck support, new AFOs, and the knee support arrive to actually see if that is all that is needed. The guy from Millenium was here as well, and gave some input daring to ask the questions we had thought of (and no one really answers). That was fun too. Also, I got a big box from my other granny with lots of new books! And most of them are in English and Spanish! I foresee long hours of mental drilling... My family is driving me insane with all this educational fun! Gosh, everything has to do with education? Come on! And then they wonder why my head is so heavy!

Well... My nightly treatment must take place, so now... to see what the rest of the week will come up with. Ah, the journey never ends!

~

SINGING IN THE WEBS

Yup, the secret is out... Now no one has any doubts about it... I'm singing and talking to my favorite friends, especially the WonderPets. Gosh, you should have seen Mommy and Daddy yesterday when the caught me offguard... I was minding my own business in the living room, enjoying my wonder people, and then I see two figures peeking at me from the kitchen... Kodak moment! Yup... no strong words are uttered, but I was repeating the songs and the dialogue and reacting to my show uttering the sounds that are the unmistakable equivalent. The sound that mimics the word "teamwork" leaves nothing to the imagination. I ignored my parents and kept on with the talking and singing for the rest of the afternoon... but I know they were very surprised, especially because I kept doing it... LOL It's been more than three days that I do it loud and clear so they finally realize that yes, it is true, I understand... I just prefer to have everyone guessing... I love the drama.

Besides this, I've been getting stuff so I am ready for Winter. The North Ward sent me some basics that I really needed, and Mommy complimented it with some stuff she got thanks to the Colombus Day specials. I am very happy with everything. I even got the stickers for the ceiling, so I can exercise my gaze as suggested by the OT. God definitively has blessed me with just the right amount of minions so I can really live.

Last week was non-dramatic, and I just kept chillin in my wagon and in the stander. On Friday my wheelchair arrived again, so now we are in the trial process to see just how useful and safe it is. This next week will be full of appointments and things to do... I will get my flu shot tomorrow, and then on Tuesday I will go to Helen Hayes to see the Speech Therapist over there (and that is a long travel). And then we will have the Halloween weekend celebration... I keep rollin'and i ain't stoppin'. But for now, enjoy this mini scrapbook of October:









I can't say my life is boring! And now I even have one little visitor that every now and then shows up and makes things interesting. I also discovered the VeggieTales, and I am starting to get into them... Hey, gotta give my minions a small break from the WonderPets! (although secretly I keep watching when everyone sleeps, shhhhh... that's a secret!). And I also got the news that my Godmother turned a year older... Hey! Where's the cake?! Come on! Birthday without cake is like a house without me! Send in the cake! (Mommy will liquify it in the blender so I can get it in my tummy, no problem). And to my Godfather: Have a safe trip back to Macondo, USA!

GOD: Thank you for keeping me safe, for the daily blessings that you send me, and for so many people that love me so much! Help those who need you, heal all those kids that got sick with that swine flu and other illnesses... Place Your hands over them and carry them, and make them feel your Love. Amen.

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