Tuesday, August 30, 2011

In a week and a half...

Camp is over... now what? Well... I prepared myself for a spectacular experience! My birthday! And it came... My Godfather came from Florida, and we celebrated with those who care so much about me. There were many plans laid out for the next two weeks, as I wanted to do so much before classes started! Well... As the saying goes "Uno propone y Dios dispone" which translates to "one proposes and God disposes". All is summed up by three things: Earthquake, Hurricane Irene, and illness.

Well, nothing so big here in Newark but big in terms of it never trembles in NJ. It was all over the news, people were really scared... Big drama for a whole week. The good thing is that everyone got to revisit the what do do lists that prepares in case of a quake... The bad thing is that people got to extremes... I know that I was born in an island that shakes a lot. What we felt here was nothing compared to what my folks have experienced. In a way it is good that my folks know how it feels and what to do... but here the "natives" became headless chickens for a while.

Hurricane Irene... Just by saying Hurricane should suffice. Here in NJ nothing mayor has strike since 1936... So... Coast and areas that could get flooded were evacuated, and it was mayor pandemonium. I got scared because of my specific need of constant power for my ventilator and pulse oximeter... But God kept me safe, and thanks to Him we didn't get flooded and lights were not out in our area. We know many people suffer many damages, many areas got super flooded and electric power is down right now in nearby cities... My parents say we were lucky Irene was Cat1 going into being a Tropical Storm and taking to land... They say it could have been beyond dangerous for us if it had stayed Cat 2-3. I hear their tales of Hurricane Loiza, Georges, Hugo, Hortense... and it is all very scary. I am thankful and grateful that everyone we know is safe. God is good and merciful.

Me being sick... Ugh! It all began a week ago with what seemed to be a stomach bug. I had a bit of bile coming up when my nurse suctioned, but after Pedialite and Tums my tummy got better and I had no reflux at all (which is my normal). Well, a day later I started to have a high fever, followed by high numbers in my oxigenation and heart rate. After that, it all has been awful! I've been fighting off this bug since last Wednesday, started antibiotics on Thursday, and even saw the Hurricane Irene come in and go during the weekend... And I am still sick. I know that for me a simple cold is a two to three week nightmare, but come on! Mommy and Daddy considered taking me to the hospital on Monday, but then I did so good during the day that the idea was put on hold.

Luis, the RT, came in on Monday afternoon, and after checking me up withdrew the possibility for pneumonia and just reinforced we should just keep up with what we are doing. So... I get respiratory treatment every four hours, and saline nebulizers before them. Plenty of percussion and CPT followed by cough assist and deep suction sessions. I get so beat after all that! But I know I need them, so I don't even complain as I usually do. Daddy got n touch with the doctor during the night to follow up on me. I'm still in close observation... My home is run like a hospital. I'm glad we've stayed, I get some real cat naps between the sessions.

By Thursday it will be the 7th day... on Sunday it should be the last day for antibiotic. I hope by then all this ickyness and crazy stats will finally subdue. I need to get ready for next week! I'm looking forward to the new school session. My favorite teacher should be back, and I'm looking forward to trying out the video-conference with the school. I hope things don't get shady... Mom and Dad are doing their best to try setting up all my services as I rightfully deserve.

Today my Godfather Steve goes back to Florida. I am so upset we could not hang out as we planned! I've been sick in bed more than a week, so all the projects we had planned went down the drain... I will try completing some by next week (like creating the solar system, and doing a mosaic picture... and a sequin art project...).

At least I got to hear him sing me the "Cheki Morena"! Now THAT was priceless! Don't worry Sti, I will complete them in your honor. And you better get ready to chat with me through video-conference too! Don't think that out of sight, out of mind. I may be a diva, but I have a heart too. And we all love you very much! You have not gone and I'm already missing you...

So... As you all can see, my life keeps on having quite some action, adventure, and drama! It is all as good as it can get.

GOD: Thank you for keeping me safe while all the chaos has happened around me. Thank you for blessing my life with people that really cares a lot for me. Thank you for protecting all of us through this bad weather, and for protecting so many families through the storm. Take care of everyone who needs you. Let no one go hungry or be without shelter or be alone... Thank you for carrying me in your arms always, sustaining me with your never-ending love. Help me overcome any obstacle, grant me strength, health and courage as always. Amen.


Saturday, August 20, 2011


This has been my birthday bash celebration week! I've been loving it! I do have to mention that the whole camp thing was a big birthday present. Besides that, the awesomeness of this week began on Monday with the arrival of my Godfather Steve! It's been 3 years since he last saw me in person, and that last time was not pretty (it was in the hospital back at home in Puerto Rico). Imagine his surprise when he saw how big I am! It's been fun having him around. He talks a lot, though... Would you let my nurses work? Sheesh!

Mommy worked on painting some Veggie Tales pirate decorations Monday and Tuesday, and almost had a heart attack when NurseInna made one fall into the floor with her gust-of-wind powers. That was hilarious (well, not for Mommy, but for us). I just know we had lots of laughs on Tuesday with the improvised pre-birthday gathering that was quite a happening. NurseInna came in to visit, brought Tiramisu cake for the local adults and two cute calm framed photographs she took herself. Our "green" acquaintances dropped by by mistake (also hilarious)... It was a full house so suddenly! Then the door kept ringing with people asking questions. It was all amusing.

Anyway, here are the decorations outcomes:

Here are Captain Sweetpea, Princess Laura and Larry, the Legendary Cucumber!

Here is a Pirate that don't do anything, Jr Asparagus, King Bob and Queen Blueberry!

A full size shot of the whole decor... These were big ones! Awesome!

The big day arrived on Wednesday 17th! I was ready and perfect with my colorful hairdo (thanks to Mashaela and her friend Peanut!). I stood in my stand, and rolled into the living room! This year the theme was Veggie Tales Pirates Who Don't Do Anything and a Princess. The top 10 countdown ran with its music for various times. I did not mind, I love the silly songs! The living room was filled with balloons with eyes (I'm guessing veggie people) and two murals with my main Veggie Tales friends.

The cake was so pretty! It was in purple, blue, pink and yellow with lemon filling. It had big flowers that were delicious! I got a little concerned when it's candles were lit as it looked like a small fire hazard... but I knew Mommy & Daddy would not let anything bad happen to me so I tried to relax.

My two grannies and my great-grannie were here through the phone, and so the candles were lit and I heard everyone singing the birthday song for me! I loved it! I made a big wish, but I'm not telling what it is... like Cinderella says, if you tell your wish/dream then it won't come true. I really want mine to happen!

After the cake there were presents. I absolutely loved turtle Tuck! I have my own pet! Feeling him in my hand was... weird... and wet... but I love him anyway. I hope he gets to grow big and bold. I also got some movies about animals, a planetary system craft project, a flower pot, and of course books about animals and their habitats! I also have a new scrapbook so I can put inside it all of my first preK projects so they do not get lost or damaged (I'll make Mr.Farina proud!).

I'm so happy I got so many good wishes from so many people! This was a very special birthday, each day I feel I am surrounded with much more love!

Now I have a few projects to complete before classes begin... I hope my Godfather can help me complete some. I'm definitively getting the crafty bug! I'm making a pirate ship with Mommy's help, but that's not done yet... I need some rest, after all I had quite a Summer!

Here's the video of our celebration:

Wish from Lynette:Viva la Deeva!!!

"Hey Deedee, it's a little after midnight and you have just turned four. That's an awesome number. You've earned your ranks among the big kids now. I remember not so long ago, we were all praying hard for you to make it to one and then two and then three. Each celebration though happy, was met with a little apprehension. Until one day we started realizing that God had a great and wise design and he meant for you to live life to the fullest and for us, who have been blesssed to meet you, to have the rare opportunity to witness a miracle.

As I said before, you have barely crossed the treshold from baby world to big kids and yet you have touched so many, earned love and respect, all while building excellent reputation as a big sister...believe me that is quite the responsibility!!!

Hmmm... since four is a magic number, we might as well make something of it. Somewhere I think I read that really cool kids actually get four wishes... so wish away sweetheart and surprise us with all you'll grow up to be."

Wishes from Angela & Heather:


Thank you for allowing me to be happy and surrounded by love. I have much to praise you for... and much to give thanks for. You know my heart of hearts, and how grateful I am for the change You gave me to live. Help me do the best with all the talents I have, help me make a difference in each person that one way or another reaches me. Help me be an instrument of your love and peace. Grant me many years to come, and the courage and strength to face any challenge and prove that nothing is impossible as long as You bless me with your presence. Hold me tight in your arms, and protect all of those who need you. Amen.

Tuesday, August 16, 2011

Getting Ready for my 4th Birthday!

This year the theme is Veggie Tales Pirates & Princesses. We won't be able to try telecommuting with PR, but we will get our main people by phone so they sing to me!

If you want to, send me video birthday wishes to my direct personal email:


I want to actually see you all! I'm looking forward to seeing & enjoying your videos!

I am very blessed, and I know it. I recall that when I was 4 months old the doctors told Mommy & Daddy that I would not make it. But they did not give up hope, and they did everything they could to save my life. Many people helped, too, with so many sincere prayers! And guess what? Miracles happen all the time, you just have to really believe and keep a keen eye... Here I am, four years later!

I can do all things through Christ which strengtheneth me.Philippians 4:13

I know how SMA makes things difficult for me, but I keep on fighting because difficult does not mean impossible! I can do EVERYTHING in a different way. I will go on, fighting one day at a time. I know odds are against me, as I am one of those precious exceptions... but I don't want to become an SMA angel. I still have much to share with the world, much to create, much to learn, and much to teach to people too. I trust God will keep on acting through me, and that I will get to reach out to all those whom I can help.

The LORD is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths
of righteousness for his name's sake.
Yea, though I walk through the valley
of the shadow of death,
I will fear no evil:
for thou art with me;
thy rod and thy staff they comfort me.
Thou preparest a table before me
in the presence of mine enemies:
thou anointest my head with oil;
my cup runneth over.
Surely goodness and mercy shall follow me
all the days of my life:
and I will dwell in the house of the LORD for ever.
Psalm 23

And this year I also have a special treat: My Godfather flew from Florida to see me! Now, is he the epitome of awesomeness or what? I know he's preparing something out there in the living room... I hear he's helping Mommy. And NurseMashaela brought over a lady to do my hair! Wow! I'm getting all glammed up! I can't wait until tomorrow!

This year EVERYTHING have been very special. The kids at camp floored me with their kindness. It's like my celebration is going to continue for more than a week! God has been too kind to me. I am so humbled! And so happy!


Saturday, August 13, 2011

6th Week at Camp: Egypt

Well, this was the "last day of" week for my Summer schedule. First, this was my last week of Summer School. I got really upset at that, but I know that my favorite teacher will be back for the next school session that begins on September 6th. Then, it was my last week of Camp at the Newark Museum. This week the focus was on Egypt. Little did I knew that a small celebration was brewed in my honor! Oh, but I will say the details below. Right now, I just want to thank my Godfather, who sponsored this last week at camp. My camp weekly video is at the end, as usual.

Monday began as a lazy day that went on being fast and chaotic. I had my morning class, I went to camp, and I was overall in a good mood. My school teacher was proud of me as I paid attention to everything he showed me. At camp I learned what Egypt is, and I painted two pots (later on they will become an Egyptian jar). The kids were all rambunctious... What to do with the boys? I was thinking of tying them up as mommies... it is Egypt week after all... In the end I was so surprised that they actually went to sleep very exhausted! I was just glad I could finally take a nap.

On Tuesday my morning class went on swiftly... I heard the rumor that classes are coming to an end... That made me upset. I cried some, but then I was rushed to the museum so I could go to the Planetarium show. Well, at least that definitively put me in a good mood. I saw this show some weeks ago, Magic Sky, and I was eager to revisit everything I learned. Mr.Moon is so silly! Then we went into the Egyptian gallery and saw a mummy's sarcophagus and some jewelry, pictures, and statues. Mommy was in heaven, she loves anything Egyptian!

Wednesday was my last day of Summer School. During the morning Mr. Farina came in with a surprise! Since he cannot come next week to celebrate my birthday, he brought in a cupcake with a candle, and two big balloons! I loved the balloons! And I loved when he sang along with Mommy and NurseMashaela! All this attention is awesome! But then the news came in that he would not be around until next school session in Fall. I was so upset! What! Fall! That is so far away! Mommy tried to convince me that it's just two weeks... but I still think that it is just too much time. I miss my teacher already! In the afternoon I could not go to the Museum... Since the car broke down, it was being repaired. The suspense of what will happen was killing me! Imagine, I already knew I was an important character in the camp's play, I could not miss the performance! I managed to take a long nap in the afternoon, and when I woke up Mommy told me the good news: The car was repaired and ready to roll next day. I just know that at night I kept waking up with nightmares... maybe because of all the stress about the car and my teacher... Mommy calmed me down and slept with me for the night.

On Thursday I woke up late, everything was done late... My speech therapist arrived but had to wait until I was ready. Then I was in no mood to do anything... Hey, I had a bad night and then waking up early after so much missed sleep was not easy at all! At least I got to watch Lion King, which lifted my spirits. Then I got ready for camp. There was a group photo session when I arrived, and as they took the picture of me with everyone they all screamed Happy Birthday! Wow! That got my attention! I felt so happy! I even actually looked at the camera, "smizing" as hard as I could. After that, we went to the Auditorium to practice the play... it was hilarious. What to do with the kids... We girls do what we should, but boys will be boys... They kept running and chasing each other and not paying attention. I admit it is funny to watch, but I get worried... after all, I want it all to be perfect! When rehearsal ended we went up to the classroom. I finished painting my scarab and then had a small nap. When I woke up daddy made sure I had my food, and everyone got ready for snack and going home. I had to complete three projects: I had to paint my name in Egyptian, I had to do the head of the body-parts jar, and I had to help Mommy do my Isis tiara. As the song says, two out of three ain't bad... I painted the name ovals in purple and stamped my name on them. I also painted the animal head of the jar (Mommy did the head with clay, I am NOT touching that icky stuff again!). I fell asleep, so Mommy took care of my tiara. She followed my diva wishes: Sparkle, sparkle and more sparkle!

On Friday I arrived to the classroom and my peers were preparing for the play. The light was really bothering me, so Mommy put a hat on my face so I could calm down. She was also assaulted by the kids to paint their faces. It was a good thing that she remembered she still had the black makeup crayon... Everyone got Egyptian eyes! We got dressed up and ready to go! We went down to the Auditorium and it all began! We started the show as usual, and when our part ended... Oh, my! The kids had put together a birthday surprise for me! I looked around and saw them coming towards me bearing gifts, cards, and singing along with everyone in the theater! I felt so overwhelmed, and happy! I had no idea they would do that! Mommy came to me so she could let them know how I felt... Happy, of course! Duh! The show went on and at the end, the weekly slideshow was dedicated to me! Wow! They went to so much trouble to make me feel special, I was floored with so much love. When the slideshow was over we went to the special floor to break a piñata that was filled with goodies. And so was the end of it all. Here's the video for this week:

Many people wished me health and many birthdays to come! And saying goodbye was hard... I will miss Mrs.Melody and her art crafts, especially her creative hats! And I will definitively miss Elena, the twins, and Ronald. Each week one different kid joined us, and our class had no dull moments! I'll make sure I learn my planets and most stars, I plan to keep visiting the Planetarium through the year (that was my favorite activity, I enjoy stargazing so much!).

This ends my weekly summary about the camp and what I did there. These past 6 weeks have been the most amazing weeks of my life. I honestly did not thought I would be able to go somewhere and do what other kids do... Everyday I was reminded of how special and kind people can be, and how much I actually impact those around me. Everywhere I go I try to make people understand that I get things, that I really want to experience life, that I can do anything I set my mind into. Doing all this crafts with my own hands and learning about so many different cultures was fun... I feel I traveled the world! And I really hope I can do this again, next year. I made some friends and I want to keep seeing them! May God grant me that blessing as well.

So, I will be 4 years old in 4 days... I am so happy that many blessings keep coming into my life! I keep growing, and I keep amazing people. Most importantly, I keep being an instrument of God... So He works through me. And I would not have it any other way.


Friday, August 5, 2011

5th Week at Camp: Native Americans

This was another busy week! Between summer school and summer camp and crazy therapies I barely have time to breathe! I'm happy about this, though. I never imagined I could do so much! There's nothing like the simple things in life... This week at the camp was sponsored by my godfather. I know I can always count on you, Uncle Sti! This week's theme was Native Americans Heritage. I learned a lot!

Monday began as a hectic day. NurseMashaela was sick, and everything ran late. At least my personal slaves pulled through and so I was ready for my class and for camp. At camp, this was supposed to be American Heritage or American History but in the end it was changed to Native American week. We started out dealing with clay... to make a pot... Ugh! Gosh, why me? I absolutely hated dealing with the clay. My hands got all reddish, my clothing got clay dust on it, even my neck pillow got clay! And the smell... Yup, I could smell it. No, I did not enjoy playing with clay. It is worst than play dough! While the kids napped I saw that the assistants were cutting out shapes from white sheets of paper... but I fell asleep to wake up and have a walk in the garden. Monday was a cozy, quiet day.

Tuesday was a galactic day. My school teacher brought some books and some videos about the Universe! That was so exciting! I love anything that has to do with the stars and with galaxies! He showed me this big book about the planets... I could not get enough of it. In the afternoon, I went to the Planetarium and guess what? The movie was about two kids exploring the planets! What a treat! I recalled everything Mr.Farina had said in the morning. Yes, it was all true. I went out of the Planetarium trying to figure out just how I could get int space. Mommy told me that now there are no more flights at least for a while... Ah! Maybe I can study hard and become an astronaut, and then I would go to space as I re-open the American space quest! We boricuas make the impossible a possibility. After the planets, we went for a short walk into the gallery. We went to the Native American gallery and explored their ceremonial clothing and many pots.

On Wedmesday my teacher brought another book, this one explaining everything about stars and galaxies. Now I know what is a black hole and small white dwarves, and I am very certain I know how the big dipper looks! And NurseMashaela came back! She was sick the past two days. I'm glad she's better. I missed her silliness. In the afternoon I went to camp but I could not stay. Two kids were very sick and I had to go home, just in case. I did not get sad, I used that time to have a very nice nap!

Thursday started out with my Speech Therapist early in the morning. He is very silly! This time he wanted me to make funny faces... Well, actually we made some faces that sent him messages about what I wanted to do and how I felt. I can tell anyone yes or no, but now I know I can say whatever and I don't know, and make a very important command: "Turn the page"! Well, it is important to me anyway... I love books, so... yes... this is very important! Anyway, back at the museum we try rehearsing the play for the end of the week, and we did some weaving with paper. I made a nice weaved rug with colorful pieces that my friend Marguerite gave me. It was difficult to cut the main big piece, but Mommy helped me and together we conquered the paper monster! I liked the outcome. We went to nap, and since I didn't felt like painting my pot or creating my tipee I had to take them home. At night, I did some stamping on my tipee and then Mommy helped me to paint some Native American images. I painted the pot red, so it would dry. I went to sleep with images of good glyphs on my head!

Today, I had a fun speech therapy session in the morning. Oddly enough, my therapist brought over a talking toy with details about... the planets! Coincidence? This has been a far-out week! My PT brought over a guy that measured me. Now they will try to keep fighting for a headrest and a stroller... and then for an appropriate wheelchair. He suggested the Solara... Hmm, talking about planets and me... In the afternoon there was no "serious" show so I went straight to my museum classroom. We all got our faces painted, and went on to the show! My group performed a Rattlesnake Dance. We spinned round and round and made sounds with maracas and jingles. That was so much fun! Each time I love the stage even more. From here to Hollywood!

Here's the video for this week's performance. Enjoy!

GOD: Thank you for allowing me to do so many things all these weeks. I know I am fragile, but I fear nothing as I walk under your shadow. Thank you for keeping me safe, and for allowing my new friends to heal fast! Please help everyone that needs You, as there is nothing impossible for you. This week I pray to you for the fast recovery of Kimmi... Help her, as you have helped me. May she be surrounded by love at all times, and may angels guard her always. Amen.

AUGUST is SMA AWARENESS MONTH! So, I got home and then realized that it was time to make a stand! And so I did!


This month is SMA Awareness Month. And for today, and every Friday of the month, I will stand with so many others for the SMA cause! Here I am, standing just as I arrived from my play. SMA is serious business. It is a killer that can touch any family. Join so many families to battle SMA by sharing awareness and helping to fund this cause. SMA is the #1 killer of babies, and is the reason why I cannot walk, sit, swallow, lift my limbs or hold my head. SMA creates massive muscle weakness, it is degenerative and it has no cure. I am an exception. I have beat the odds and doctor's predictions... But still, I need a cure.

I want to sit. I want to jump. I want to run. I want to talk. I want to breathe on my own. Help me beat SMA!