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.

Amen.

HAPPY 1st BIRTHDAY DEEDEE!!!!

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...

IN JUST ONE MORE DAY!!!

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!!!

My B-DAY... IN JUST 5 MORE DAYS!

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!).


FRIDAY 8 GOODBYE to RUTH
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!

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TV DEEDEE

De aquí pa' Hollywood!!!!

Just Another Day

AT JULY's END

Oh, Dear! My life has turned from mild adventure to a very hectic ride! Two weeks have passed since my latest posting, almost in the blink of an eye! Almost no time to waste! What has been going on? Hmmm, let’s see… During the week of the 14th… I had a medical appointment on Monday. After making all arrangements, the appointment was cancelled as the transportation put many excuses at the last minute… Insane! I was already dressed up! I had wakened up early! Sheesh! 45 minutes after the doctor’s date they called cancelling… So… I missed that appointment, and we all breathed in-breathed out before trying to figure out… what now… That day the doctor’s appointment was changed for next week. How nice… For the next couple of days Mommy was in a big hassle filing papers and scanning her school documents. The AIO answered a yes, so Mommy began a class within their diploma offering (that should take up to a year, but she says she will be able to be at home with me and work after she gets it… Let’s see if that idea works out… I tell you, Mommy is getting desperate in her job hunt!).THURSDAY 17: I AM 11 MONTHS OLD!!!! Yup, I just turned 11 months old! Imagine that! I am so happy! Just one more months for my BIG 1st YEAR!!!! I hear something is up, Mommy and Daddy are planning something… and Godmother and Godfather are also being secretive… Hmmm… Mommy did a strange photo session in which my diva status increased! And so the Siren’s Story came to life… Consider this a spoiler of what is to come in 4 weeks… I think I can get used to this...

FRIDAY 18: WIC
Daddyslave figured out the right transportation company for me, plus attended the WIC appointment on time. The weekend arrived and Mommy was sick… again… We prepared psychologically for the next doctor’s appointment… transportation is a big hassle when you are a special needs baby!SATURDAY 19: THE DEAD MOUSE WITHIN THE WALL part 1 The horror! As Mommy walked into my room she knew something was wrong. Opening my closet revealed an ugly stench that sent her to the bathroom. So, Daddy had to take me out of my room, take out my crib and toys and everything that was inside the closet… A mouse had died within the walls of the closet, so it could not be taken out… And it was rotting! Awful! Appalling! Mommy was so disgusted and angry about it! Me, well… It was fun to watch the whole scenes that took place. My room was banned for the rest of the week, and the storage/computer room was habilitated so I could use it… Now there are no secrets held from me! Buahahaha! I know all the passwords and sites… Mommy is such a nerd! And daddy is such a Gamer! SUNDAY 20: THE DEAD MOUSE WITHIN THE WALL Part 2 Oh DEAR!!! The stench is still there to remind us!!! My room is OFF LIMITS! The good thing has been my sharing so much time with Daddy in the Computer Rom. The bad thing is we are all crammed up into this ipsy-bitsy space… And the whole place is a mess. Mommy is psycho about it, of all times this next week is very important for me! I will finally get my nurses, and there will be a special therapist reunion on Tuesday. MONDAY 21: DOCTORS APPOINTMENT Monday arrived. We all woke up early, and prepared for the transportation to arrive… We got a call and we feared the worst… but no, they were not cancelling. Transportation had an emergency and will run late… so we waited for them. Good, for a moment I thought I got all dressed up (again) and nowhere to go (again). We arrived at the doctor’s office,I got checked and attacked by vampires… The doctor wants to run a test to see if I can stop the Iron intake. Hey, what about my superpowers? Sheesh… At least we were back at home before 1pm. Everything went well, and I will get a Nutricionist date… Seems that my food habits will soon be addressed... What’s so wrong with my diet? Well, I’m 32 inches long, and weight 27 pounds with 4.4 ounces. They say I’m fat. Can you believe that? FAT! Me, a diva! Now I have to go into a diet, and I even heard Mommy uttering something about a secret formula that our secret society sponsors… The AAdiet… Whatever that means… Somehow I don’t think it has to do with the airline… TUESDAY 22: SO MUCH PEOPLE,SO LITTLE SPACE! Yup, there was an overload of people coming into the house to see me! First, the therapists were gonna gather to bring some cool pictures of my toys and show Mommy and Daddy how to improve my communication skills. As Tracy and Pat and Ellen arrived, the people from the caregiving service arrived too! So I met Irma, and Iman, and two others plus Ruth and Ericka! Oh, my!!! It was so overwhelming!
So… First I focused on my therapies. Hey, that’s very VERY important! Tracy gave a one hour speech and demonstration on how I should be treated so everyone learns my language! Good! About time someone scold everyone about it! I communicate, and it is so frustrating that everyone takes my “grunts”for granted. Yes, granted, I complain all the time… But I do talk too! Hmph! Tracy brought me goodies in a bag, but Mommy took everything away without me being able to see things… Sheesh… All work, no play…
Later on, it was the care-giving agency people’s turn. They met me and asked things and praised my beauty, of course. I had met Ruth in the morning, but had no idea of all the important things she would do for me! So… after they all were gone, I spent some time getting to know Ruth’s rules. I better behave! In the afternoon Ericka arrived to officially begin her shift. She entertains me a lot. Yup, she has been the first one to actually sit down and talk to me. Mommyslave, Daddyslave, learn!
WEDNESDAY 23:FIRST BATCH, THE OFFICIAL 1st DAY! Mommy and Daddy were really tired from last day, but got up early to show Ruth around my stuff once more… Remember, not in my room… so everything is misplaced… (A good opportunity for magic tricks). The day went on, Daddy tried to find information about Section 8 but nothing so far… Yes, we need a plan to keep our roof since it seems that getting a job is hard these days… Mommy and Daddy are going insane looking for a job! They worry so much about everything, especially me… I have to remind them all the time that they must not fear, we are in God’s hands. He never fails. THURSDAY 24: COPING WITH TRAFFIC The new routine is very amusing to me. I get to see new faces, and I love that. But Mommy and Daddy are not thrilled about it. The good thing is that we all can interact with more people, but having people in your house for 16 hours a day all 7 days a week is a bit… unnerving? I am used to being a public figure, being famous and all, but I think they are not too happy with the lack of privacy. Daddy is cracking… Mommy reminds him that things could be worse… Besides, right now the help may seem useless as they do everything and like doing so… but when one starts working then things will get tight. I remind them, picture the future and bear with it. I know, you love servicing me, duh, you are my personal slaves, but even slaves need free time for themselves! So I am convincing Mommy and Daddy that yes, the traffic of people in the house is high but… a needful thing. Trust me!
FRIDAY 25: THE SECOND BATCH Today I met my other two caregivers: Sheila and Ruby. My morning caregiver arrived, and Daddy showed her around. She will be covering weekends too. As everything was not in its right place things seemed difficult at first as everything being clean is not evident at first glance… especially in the computer room. Come on, people, give Mommy and Daddy a break! This is not my room (thank God). The stench in my room had almost vanished, and so plans for my return to my kingdom began to unfold. Some of my items were put back in my room, but I had a last stay in the computer room… The afternoon caregiver gave Daddy a lift to the grocery store, so I am happy my minions can now have a variety of food for the next two weeks… Hearing Mommy complaining about pasta all the time ain’t fun!SATURDAY 26:CLEANUP FRENZY Mommy cleaned up my room’s windows and walls, and mopped the rug. Yup, you read right (I think she’s loosing her marbles, but don’t tell her anything!). And finally my crib and my respiratory equipment were placed back where they belong… I am so happy to be back in my place! Oh, yes, I slept like a baby! SUNDAY 27: MORE CLEANING!? I was awakened with weird humming sounds! Mommy kept on her cleaning spree taking advantage of the lent vacuum cleaner, and cleaned up the complete apartment. It was funny watching everything going on. I wanted to rest, and so I went to my room earlier than usual. I slept soundly throughout the night… Nothing beats being in your own room! MONDAY 28: CHOICES,CHOICES Daddy and Mommy decided that having so many services during the week, and then the weekend, was too much. So, they plan to get the weekends free so we can have our own “private time”. So much people coming in and out was driving them insane… They need a break. I understand. Sometimes I need a break too. It’s not easy being a Diva! I was really happy during the whole day and it showed. Mommy was not feeling so good and had to retreat to rest… a lot. Me, I bonded with Daddy and my caregivers. Yup, I really felt like being a social butterfly, being chatty and all. During the afternoon my OT passed by and we had a very interesting conversation. It’s about time someone learned my language! Sheesh! Communication gaps can be dangerous! Imagine wanting Ariel and getting Hercules! Ewww!
TUESDAY 29: THERAPY!!!!
Oh, I was a bit of a sleepyhead, but woke up in time to receive one of my PT. She had brought a nephew so he could asses what an PT/OT does with special kids like me. Gotta LOVE the attention! Yeah! This is how things should be! It’s all about ME! So… I did my exercises, showed off my muscles, and laughed a lot. During the afternoon, SURPRISE! I got a big, HUGE box that the UPS guy had trouble handling through the stairs. One of the other families sent a special stroller so I can be more mobile more easily! That is so cool, and so exciting! I just hope I don’t outgrow it too fast… Lately Mommy calls me her little monster since I’ve grown so much! And so, finally Mommyslave had time to take dictation from me and write all this. I usually keep her under my leash, but I figured she needed the break… between her class and being sick all the time she has been in deep need of TLC. And that’s what I’m here for, besides being bossy! Hey, dictators have feelings too! And so a new recount of my daily adventures ends… but don’t you dismay! I’ll be back sooner than you expect! THE COUNTDOWN BEGINS!!! In 20 days, I’ll be 1 year old!!!! Has God blessed me or what!!!

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