WEDDING ANNIVERSARY & CHILLING

And so the month of love and friendship arrived! Awww… Which have been the highlights so far? Well… Let’s see… Mommy and Daddy celebrated their 3rd Anniversary on February 3! Three years and counting! It’s been fun, this is their leather anniversary! It’s all going so fast that when they least expect it they’ll be celebrating their Silver Anniversary! So, big hugs and big kisses to Mommy & Daddy! May we always be together, through thick and thin!

Me, I’ve been chillin’ in my room, in the living room and in the computer. The splint guy brought me the leg support that I needed, as well as some hand splints that makes me ready for action! Do I look like I’m going boxing, or what? These are so cool! If it were for me, I’ll wear them all the time.

All the fuss now is about me making choices and selections. Everyone is drilling me with the flash cards, and the selection boards, and more cards… It can be interesting for the first five minutes, but gets really annoying after half an hour. One thing I don’t get enough of are books. I just love the books about the sea and about animals. Nothing beats that. Yes I do like my princesses and my fairies, but there is nothing like watching a pop-up bee almost flying towards me. I just love the 3D experience!

Mommy and Daddy are also showing me some good stuff in the computer. Since we no longer have Noggin TV, I get to watch the videos and some of the shows at Nick Jr’s site. It’s a delight to watch Moose-A-Moose again. I really like him, and his friend Zee!The multi-cultural and multi-language drilling also keeps going… Now it’s all about Kailan (and don’t get me wrong, I love Kailan… but why people don’t get that there is nothing as awesome as the Wonder Pets?!)… So I’m learning the basic colors and some basic numbers in Chinese… Do I get a golden star in my forehead? Mommy has also let me watch some Dora even if she dislikes her… I guess she figured that besides her and Daddy no one else is gonna teach me Spanish here, so Dora will have to do. And she has seen that I enjoy Dora as much as Kailan, so… Spanish, Chinese, English… Oh, and the whispers of Korean that I recall from my months in Mommy’s belly… They don’t call me over-stimulated baby for nothing!

On the serius stuff, I’m still waiting to get paperwork and the green light to finally get my communication device. It’s taking too long to get answers… I also need to explore some options with a movement sensor, the clicker works only sometimes and I get VERY frustrated. The wheelchair and stander keep being not perfect and not appropriate for me… We’ve all tried dealing with them, but the fact that they are not the right items for me doesn’t change… I foresee more drama about it in my future. Mommy is also gathering as much information as she can about stem cells treatment and the US advances about it, so far all roads lead to that as the ultimate treatment for me. We are all hoping that my new sibling will help me achieve treatment… aw, the youngest and the one with such a big responsibility! And he/she’s not even born! :P

So… God has been VERY good to me. It’s almost a year since the last time I was very sick, and I’m truly grateful for that. He has given me the chance to share time and life with my family, to celebrate my small big accomplishments and to smile. I am happy, I am surrounded by love… And I have been blessed with the ability to share my happiness and love with everyone that touches my life one way or the other. Hope achieves the impossible.

Last week some friends lost their battle against SMA, earning their wings. I pray for the families of these kids, so they have serenity and courage, and so they feel at peace knowing that their miracles were here on Earth just the right amount of time to change their lives forever. I also pray that so many sick kids can finally heal, and that treatment for SMA becomes a reality soon. GOD: Keep our lives in Your hands, protect us, guide us, and send all Your blessings to all Your children. Amen.

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SMOOTH SAILING

This year things are running smooth for me. So far, so good. I still can't believe that I spent all the Holidays at home! That was very, VERY special! Three Kings Day is over by far, and I still keep on getting presents... Sweet! The "viejitos" that Godfather sent me finally arrived, and they are awesome! My favorite is Andrea, the brunette, and I talk to her all the time.



Mommy has been the one going to many medical appointments. The little one is really messing her up! Well, at least I try to keep her spirits up allowing her to play with my Kai-Lan mega bloks. I know she has as much fun as i do putting it all together! I still can't believe I'm gonna be a big sister! Wow! Now I gotta think of how I can be a good role model for the little one... But hey, I have enough time to think and ponder my master plan.



I went to see my pediatrician on Monday. She was quite happy and shocked that nothing has been going on with me. She keeps asking trying to find something wrong with me... It is funny. Well... I am definitively glad that people around me take good care of me, and go to quite some big measures to keep me healthy! And I know this winter was not polite to so many! God keeps on sending me many blessings. I cannot complain.



I've been playing with some boards, and I am still trying to figure out the point of Memory when I cannot command things away with my eyes... At least I'm getting really good at the Yes/No questions, and selecting without hesitation what is what I want from the communication cards. I still have to get the hand of the images that are not so familiar, but at least now everyone is seeing clearly that yes, I do understand and I do have predictable preferences... most of the time. I'm trying to send that point across loud and clear. I really want to be able to pass all tests when the time comes to show the eye gaze people that I mean business!



God: I send out a big prayer for so many that went to You a week ago, and for so many kids that have no shelter or food. Protect them with your Divine presence, and show them mercy and justice. I thank you for healing so many of my friends, making miracles every second of our life. Always craddle us in your arms, granting courage and hope and peace... Amen.


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HAPPY THREE KINGS DAY!

Here in NJ they don't celebrate this traditional hispanic custom, but we don't care. Our roots are back in Puerto Rico, and we celebrate as our whole family back at home do, so HAPPY 3Kings Day (besides, that means more goodies for me)!. Nah, I know, I am being just a bit mean, but don't worry I don't cross any boundaries (mommy and daddy would be very mad at me if I did, and you don't tamper with the higher powers!). So... Enough of that (for now).

I am happy to say that I had a blast in my Three-Kings day! It all began as a normal day... the same old routine... even Daddy had to go out for quite a bit... But then at night I heard that I was going to the living rooom after 7:00pm (which is not a common thing). Daddy took me to the sofa, and... Wow! There were so many gifts for me, all under the Christmas tree! Mommy setup her laptop so we could all film the unveiling of all the goodies that the three wise men left for me, in the name of so many people that love me so much! I was thrilled with everything! I can't believe how good life has been to me! I'm so happy, and so grateful, and so lucky to be surrounded by so much love!

Here are the videos of how we celebrated OUR THREE KINGS DAY! Enjoy! :)

DEEDEE's 3KINGS DAY PART 1


DEEDEE's 3KINGS DAY PART 2


DEEDEE's 3KINGS DAY PART 3


So... Gifts were unwrapped, toys were assembled, castles were conquered, and my divafy wardrobe keeps growing... (and a little camel whispered something about some gifts sent from very far away and that will arrive anytime soon!). The year started with a bang, and I am so happy about it! Imagine if the bang is big, I'll have a sibling by the end of Summer! Yup, Mommy's oven is cooking something, and hopefully it will be something as fabulous as me!

Thank you, grannies and godparents and Mommy and Daddy and friends! You all have made me feel very special, and above all I feel your love no matter where you are. It is difficult handling things being so far from all of you, and even if thanks to technology we don't appear so far... it is hard. But soon enough we will all be together, soon enough we shall all laugh and cry and dance under our blessed sunny spot in the Caribbean! I love you all, and I thank God for having you in my life, and for Him granting me so many miracles and blessings each second of my life.

May this year bring on answers and much more hope to SMA families all over the world! And may Shira, Stella, MJ, Emily, and all other friends who have been through health issues through the Winter heal fast, so they go home soon!

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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!

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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.

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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!

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