Wednesday, August 27, 2008

A week after my birthday

Ten days have passed since my birthday, and so far so good! I’ve been doing great, getting so many messages of encouragement and support, and most important of love. So many people pray for me daily! I have made it this far because of that!

Last week I ventured out two times! Wow! That was exciting! I had an appointment with the nutritionist on Monday. The ride was smooth as the medi-taxi crew made sure I was ok, as usual. The doctor’s visit went without trouble. Mommy mentioned that she wants me to start the Aminoacid Diet and the nutritionist just gave her the go with a new formula named Elecare. I should start taking it by the first week of September. Mommy wants to make sure that I am well before switching my food… As I came back home, Mommy looked up all information of the new food and it seems to be fine. We will see…

On Tuesday, Therapist Pat came and did my routine range-of-motion checkup. We played with the farm animals and other toys… She is always so upbeat and happy! I wish everyone were like her!

The rest of the week had nothing of interest, until Thursday. At night I had a small incident that allowed me to travel a bit more, and at night! Just after Mommy and Daddy and NurseGlenna had finished eating my birthday cake, my G-tube came out! Mommy thought at first that it broke, but no… upon checking the G-tube she realized it was just deflated. Nevertheless, Daddy called up 911. The ambulance that arrived gave us a hard time because we live in a second floor… Mommy suggested taking me with wagon and all through the fire escape so things would be easier (a stretcher doesn’t fit through the stairs and I could not be moved). I laughed through it all. At the hospital, they managed to get a hold of a new G-tube and the intern actually was the one that knew how to stick it in… Hmm… Anyway, then we had a two hour stay until we got an ambulance to take us home. It was midnight… I enjoyed the lights and the night air. Everything looks so beautiful at night!

On Friday I was allowed to sleep a bit more. By midday the family psychologist visited us. And an hour later Therapist Evelyn appeared to do some OT on me. NurseKim took a few moments to educate her a bit more about SMA and what should be expected from me. Well, you know what they say about it… I just hold this deep secret in my heart: I will do MANY things… Just wait and watch! In the meanwhile, I’ll just humor everyone. Mommy gets psycho each time they try to sit me and I desat… I must admit it is uncomfortable as I cannot breathe while seating! It’s not fun, I tell you!

Saturday and Sunday were quite slow. I watched the complete Lord of the Rings saga! Oh, I adore Legolas! I love elves! Daddy tried to do a video-conference with my half-sister, Mandy. I hope that somehow she gets the love that he feels for her as well. I know Daddy misses her much. And her birthday was last Wednesday!

On Monday I got a date with my Pediatrician to get my 1 year shots! Oh, I should have known it… I was so happy to get out of the house! And then I got there, and they put me in a room, and I figure… Hmmm… Something is fishy, they are talking too much in hush sounds… Then there came the nurse with the needles! Terrifying! Well… At least it were not the LONG needles they used for my 4 month shots! So… I grew up another inch, and I weight a bit more… 30 pounds and 33 inches. I went home, quite tired from all the commotion. Daddy gave me medicine to prevent fever, and I was treated to watching that old cartoon about the blonde girl with big eyes who was an orphan… Yup, that Candy Candy cartoon… Whoa! I’m mesmerized! No songs, but it is really interesting. I think my first words will be “Srta.Pony, Hermana María, Annie, Anthony, and Candy”!

Therapist Pat passed by on Tuesday and repeated her exercise routine. She also told NurseKim about the goals and objectives of Early Intervention in my case. She repeated the picture-real thing association exercises, the farm animals that I love, and read me one of my favorite books. I am doing my best to show I understand more than they think. I am choosing what I like to see and for play, and love being demanding. Duh! I’m a diva after all!

I should get a visit from TherapistEllen and Therapist Evelyn tomorrow. The family psychologist should pass by on Friday… So we all keep on busy, especially me. Mommy finished one class with a high score. What a headache! Does that mean I am expected to do the same when I go to school? Sheesh! This overload of pictures and words all the time seems to imply that! Yeah, if it is not Baby Einstein on CD then it is Baby Einstein on DVD. I am so glad that finally I’m getting some fun with that Candy thing and of course with all my Disney stuff! I would be lost without my princesses!

Future plans: Well, in September I have a date with the GI to get a mickey button and a therapist reunion. In October I have a date with my physician, Dr.Bach and then with the pulmonary doctor. In November I have a date with the ophthalmologist and a checkup with my pediatrician. I always have many things going on, don’t I? I am pondering checking up the NY SMA center, I may benefit a lot from it. Now I have to convince Mommy to go ahead and plan that trip!

Well… Gotta have my baby-beauty-divalicious-sleep. Bye-bye!

Sunday, August 17, 2008

My Birthday in NJ

And here's proof of what my minions did for me on my special day! Gosh! I was beat after those two hours of talk and chat and cake and ice cream! I slept for 4 hours straight!

My day began a bit late... I kinda went to sleep late at Saturday night, so... Oh, well... You know you can't miss a beauty sleep! Anyway... Daddy woke me up and dressed me up while Mommy schemed something in the computer! What a surprise when I hear the voices of my family! I only got to see GrannyMillie, but I hear everyone: Nita, Marisabel, Sti, Maria, Gladys, Edna, Sonia... I heard everyone! They were happy and chatty, and sang for me my Birthday song! They blew on the candle that they had lit for me over there in the island! Gladys was bragging about the cake and ice cream, as usual... Maria commented on the cake that almost didn't make it with the right topping (sheesh! Imagine the cake without me on it, Outrageous!). So everything went well, I went back to my crib after taking off my special tu-tu, and I fall asleep instantly. What a day!

Thank you God for letting me live for so long, enduring all the daily challenges, and being surrounded by so much love! I am so lucky! I know that the right people surround me, in body and soul. I know I am here because of Your will, because I have a BIG thing going on... I am to teach so many things to others, and to acomplish so much, even if I am little!

God, guide my way so every step that I take is always the right one. Protect me and surround me with Your Love, as well as protect and embrace all of those who are around me. Bless everyone with Your compassion and hope. Thank you for granting me a new breath each day... For painting a smile in my face... For Life!

Allow me to give unto others all the blessings that You have given me. May I always know that the most important things are intangible and invisible. Thank you for answering so many prayers, and for granting miracles everyday.



Here are some hello's that came from Puerto Rico, courtesy of Lightshadow! While we were setup in NJ, we had our party going in PR. Yup, Our beloved DeeVa was in the party thanks to technology! We did a video-conference, well... sort of... LOL They could see us but no audio at Auntie's place, so the cellular phones did the trick. At GrannyMillie's, the video and audio were perfect and did their job. So, the party was a virtual success! Wheeeeeeeeeeeeeeeeeeeeeeeeeeee!

We got a call from Coriolis, Grandpa Fernando, Granny Millie, LS, Groundel, and wishes by Linnette and the SMA support crew. No, we were not alone today. Thank you all for your support, and for sharing this important day with us!

The Godfather sends his Birthday Wishes!

The Godmother sends her Love and Wishes!

Auntie says HELLO, eats ice cream and sends good wishes!

Nita, Jose & Marisabel send their love!

And if you wanna laugh a bit, go watch this video, named Monkey Business at DeeVa's Party!

More details later on...

Saturday, August 16, 2008


If you want to join us, send us a message so we can send an invite to you.

We will be online to try a video-conference with our family in Puerto Rico. This will be tomorrow from 3PM to 5PM.

Join us to celebrate DeeVa's 1st Birthday!!!

Tuesday, August 12, 2008


There has been drama, suspense, horror, comedy… You name it! This last week left me beat! Before saying anything else: JUST 5 more days until my BIRTHDAY! YAY!

MONDAY 4 PICTURES ANYONE?Today I got the nice notice from the Little Heroes Project that I am to have a professional photo session soon! I am so happy! I will FINALLY get to have a professional photo of me to put in my modeling portfolio! Tyra will definitively have to watch out!

TUESDAY 5 NOWHERE TO RUNTherapist Pat couldn’t make it, so I was sad. I really like whenever she shows up. She is fun and caring. Not that I didn’t get my exercises, oh, no! A diva needs to stay in good shape! Although lately Mommy is mumbling something about an AA diet that she will make me try… Diet… Can you believe it? Diet! Is she saying that I’m fat?

WEDNESDAY 6 THERAPY!Therapist Ellen arrived today, so life was interesting for a while. I tried using the wedge to sit but that effort failed… My saturation went down really fast. I will keep trying. I shall not surrender to gravity! Calls were made and the guy that should make my splints should appear next week. We’ll see… I need my foot splints! I don’t fit in my old ones from Sa Juan’s hospital. I’m getting the exercises, but the foot drop is evident. It’s been more than a month without them by now! I hope they hurry… Gotta keep my diva movements! Imagine choreography without me!

THURSDAY 7 WEBCAM FEVER & WRESTLINGMommy is scheming something… I smell it! Today we got a package and it turns out it is a small one-eyed alien that keeps stalking me! I think it is a device sent by stalker baby to follow my every step! I hear a talk about something that will happen soon… some sort of secret gathering… Something about God-mommy and god-daddy seeing me… Hmmm… Oh, I cannot stand the mystery!!!! Nurse Ruth told Mommy about her getting another job so this would be her last week with us. Mommy didn’t expect that, neither did I! I was shocked! Then the new nurse passed by in the afternoon… What an impression! Ruth and Kim started arguing about their nursing experience and I got really scared! Mommy thought that special weapons would appear, but no… A truce and off went both. Wow! I recalled the excitement of GLOW! (Oh, wait… I was not even born yet… Never mind!).

Daddy had many appointments today. He’s trying to get help for rent but so far that has been a quest in itself. The bad news included that Nurse Ruth won’t be back. She found a stable job, so you know how it is, when opportunity knocks you gotta answer! It made me and mommy sad. We really liked having Nurse Ruth around. We wish the best to her. Mommy had to work hard for a project she had to turn in before midnight. Of course, she made it. I’m always so proud of her! Always there for me, and always there for her classes. And also for scrapbooking, too! Talk about time management! I hoe I get to have a brain like hers… Well, I do have its size! LOL Nurse Ruby passed by a bit late. There was a thunderstorm, rain… you name it. But the night went fast. Daddy played on the TV, Ruby played with me and my colored-coded bags, and Mommy worked in the computer. I finally went to bed at 11pm. I slept right away!

SATURDAY 9 HAPPY FEETThe day was sweet! Just Mommy and Daddy and Me!!! Not that I don’t like the service and the attention, BUT we do need some privacy, you know? Just the three of us! Oh, yes, that’s how life should be! We watched Happy Feet, one of Daddy’s favorite movies. And we rolled all over the apartment. It was a nice day that went too fast.

SUNDAY 10 BREEZING with CORPSE BRIDENo nurse appeared for the day, so we all gathered again for a nice family evening. This time, the movie was Corpse Bride. Mommy thought I would be a bit scared… Hah! Me? Scared? I will probably end up playing with spiders as she runs away from them! I am fearless! And I loved the movie! So much color! And the songs! I’m totally hooked on those characters! Yup, watched all the special features too!

MONDAY 11 NEWBIE: KIMNurse Kim started out the day. Daddy gave her the basic talk as he got ready for college. Then Mommy kept on with the briefing. The day went quite fast. Nurse Ericka arrived in the evening, almost at the same time that Daddy arrived. Mommy was not feeling well, so she went to dwell into her cave. Daddy made the necessary taxi-ambulance appointments for next Mondays as I have a date with the nutritionist and then a date with my pediatrician. He also got me a date with DrBach in October. For the rest of the night Daddy and Ericka made me laugh, serviced me, and then gave me my therapy. Since it was late my bath was postponed. I didn’t mind, I fall asleep so fast! But when Mommy woke up and checked me up… Oh! Daddy found trouble!

TUESDAY 12 THERAPY and STAR WARS Nurse Kim arrived, Daddy whined a bit, and then I woke up around 10am. Mommy found me without the mask, playing with my mobile, and my hands on the restrainers. She was really surprised, as so far no other nurse had dared to do so. But it was a nice surprise, as FINALLY someone was doing what was supposed to be doing in the first place. Most overlook the range of motion, PT, OT part of my exercises… Most forget my exercises, period! Sitting still looking pretty should not be the way… Oh, I hope this keeps on happening. This is very good for me! And gives a break to Mommy, doing that everyday can get a bit taxing, I know… Mommyslave is diligent… She deserves the break, for now. Today I was watching “food for the brain”. Ugh! Yup, Mommy caught my whining about it on video… At least they were showing Star Wars at night. Awwww… Chuby! I really like Chuby! He is so comfy!

So many things to be grateful for! Almost a whole year! So many thought I wouldn't make it! I prove them wrong! God listens to every prayer. He certainly listened to all who love me, both friends and strangers, family and unknowns... So many pray for me daily! I am blessed. I have so much good vibes all around, all the time! My smile and my eyes tells everyone just how much I enjoy being alive, how much I love life! I thank God each night for so many good things that happens to me everyday! People come and go...they are never the same. I touch them, and through me He touches them. I thank God every morning, for He allows me to open my eyes and behold the loving site of my Daddy, or my Mommy... And He lets me feel the warmth of the sun, and see and learn so many wonders! He watches my sleep, never leaving my side. He holds me when its dark and I'm afraid. Through me He brings hope to so many! Thanks you so much, God, for such a lovely life! Thank you for bringing me happiness, and so much love!


Thursday, August 7, 2008


De aquí pa' Hollywood!!!!