APRIL ADVENTURES

Good stuff, hectic stuff! I’ve been a busy bee, traveling and learning and loving it! Well, for a whole month I’ve been going with my parents to Kessler for assessment and training on the Beckman Motor Oral Therapy and today was the last session. They got the information on that therapy three months ago, and were doing it daily, but wanted to be certain that they got it all right. And they definitively have! By now, mommy and daddy are experts on doing that stuff to me! I just love it. My favorite part is getting the gum massages… I fall asleep while that happens. It is so relaxing! The tongue exercises are a bit weird, but nurse gossip says that I am fighting the suction machine a bit with the tongue so it seems to be doing its magic.




Mommy’s birthday was on April 8th, and we celebrated with mofongo and cake. I got a taste of the sugary stuff, but that is not my preference… I like tastes that are more fruitier and bitter. I also got a taste of some cheesecake, but was indifferent to it… Maybe I was just too involved with the Cebú song… Yes, Mommy is happy that I have another favorite besides the Wonder Pets. Veggie Tales are getting there… I love the silly songs! Anyway, Mommy also started another studying adventure… I wonder if I’ll be such a nerd when I grow up. She seems to enjoy studying too much. Oh, well… to each its own.




On Friday I’ll have my physician appointment, hopefully the headrest issue of my wheelchair and stander will be addressed. Next week there’s a date for the education evaluation. By the end of the month I also have a PT evaluation for aqua-therapy, hopefully that will be a positive assessment.




Days have been quite busy, and this going out business is awesome but quite taxing… I can’t complain, I am definitively going places! And this is only the beginning… I am grateful for all the things God has put before me. He has made sure that I have all I need, and that true love surrounds me at all times. I am grateful for my thoughtful caregivers, friends and family. I am also very excited about becoming a big sister! I can’t wait to have the little brat around me! Hopefully she will be my bodyguard/bouncer (yes, from what I’ve heard she’s quite a kicker). Oh, I already have many plans for her… Together we’ll rule the world!


VIDEO: TAKING DEEDEE FROM THE LIVING ROOM TO HER BEDROOM



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FIRST TRANSITION (EI to Special-Ed) MEETING

Everyone knows I’ll turn 3 years old in August 17th, so by now things are happening to make the right preparations that such an event brings! Besides the obvious (me turning a year older, which means that I’ve won another battle in the ongoing war against SMA!), here it also means that I will be ready for Pre-K. This is very exciting! I love books and animals and learning, so I’m looking forward to the new things that will come my way! Hopefully that will also mean field trips, I’m a sucker for some fun in the sun.

Mommy and Daddy have been following-up with Helen Hayes Rehab to see if my eye-gaze communication device (the Tobii P-10) gets approved to fulfill my needs. We all know this will open so many doors in matters of my being able to clearly communicate to my people what I want and what I need. Besides this core purpose, with the Tobii I will be able to learn and expand my horizons: What I cannot do with my hands or physically, I’ll be able to do “virtually” through the computer and through Internet. I envision that for my school years, whenever I have to be homebound I will be able to attend via video-conference and actually see my peers! And later on, I may actually attend school or college through online schools, just like Mommy! But I will try to hold my horses… Back to the basics ( I know, I am always dreaming big, but thanks to that is that I am alive!).




My main goals for my PreK will be actually being successful controlling the Tobii both for communication and for basic education. I hope I have no trouble getting it now… Another goal will be successfully controlling my power wheelchair when I finally get it (until we move to an accessible apartment or house, that is on hold. Living in a 2nd floor with no accessibility has been quite a hindrance to some of my life skills goals… but at least I live under a roof, so I’ll stop my whining). Of course, by now I know my colors and shapes but that will also be reinforced too in my new learning quest, along with so many other things that I’m curious about! But I know… I keep getting ahead of myself…

On March 25th, the first Transition from Early Intervention to Special Ed reunion took place. It was just the first of many more reunions to come, and very exciting for Mommy and Daddy. My team met at home (Debby, Pat, Ellen and Maya from Early Intervention) and the special education team was there by phone conference. Although I was in my room, I was carefully monitoring everything they said, sending my faithful nurse to spy for me. The special ed people got a basic background about me from the perspectives of the PT, OT , developmental and of course Mommy and Daddy. Mommy and Daddy expressed that they want me to be able to experience the world and get every opportunity I can to live to my fullest and that they strongly believe that through technology that main goal is completely possible. They want to try my being able to actually go to school, and described my daily routine and the main things I can do. NurseMashaela almost made me cry when she talked about me… The meeting ended in a good note, and during April the Special Ed people will visit me in person. I’m looking forward to that!




IN OTHER NEWS

Mommy and Daddy have been working on some other things for me. Since the beginning of the month, they have been performing Beckman Oral Therapy on me, both after the morning respiratory treatment and after the one at night. So far, so good. They say their main goal is to see me smirk on next Xmas. That may seem like such a silly goal to most people! And it is quite a goal and challenge for me! Mommy got an appointment for me with a Beckman therapist so I get the complete evaluation and they get hints or further details they may be missing (yup, they are always up for training… They are so relentless and tireless when it comes to me!).

Also, Mommy & Daddy have been trying to get me in an aqua-therapy program. They keep getting information about swimming courses, which is NOT what they aim for… It has been quite frustrating, until the Augmentative Therapist clarified the small detail they were missing: You must ask for PT in the pool, or they will think aqua-therapy is swimming. Gosh! We don’t know how people thing anything realted to therapy is swimming, but… well… New calls asking for the “PT in the pool” at least landed me an evaluation for that purpose in late April. We’ll see the outcome (I know it will be positive… And how I miss doing my exercises in the water!).

So, Holy Week is next week and it brings on an appointment with my pediatrician and the Beckman therapist, then Easter will be followed by an appointment with my physician for growth/AFOs/equipment appraisal, the Special Ed evaluation and the PT in the pool assessment… The excitement never ends!

GOD: Thank you for carrying me in your hands all this time. Thank you for giving me the strength, courage and will to live and be happy about everything that comes my way! Thank you for my family, especially for my new brother/sister… (finally, a play mate)! Thank you for bringing hope and dreams, and making it all come true. Thank you for everyday blessings, for so many privileges, for so much love. I put before you all the families that need you, so You may provide them with the blessings they need, healing, peace and love. In special, I ask you for much health for Emily so she truly enjoys her magical vacation, and for Stella so she has no more pain in her legs. Amen.

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1st VISIT to the DENTIST

Hello everyone! Mommy has been busy handling so many appointments because of my new sibling (If you want to read about my new sibling please visit the blog A New Mage in the Family: Chronicles of a Spellbound Baby), so updates where on hold. Weeks are getting a lot busier between my appointments and Mommy’s appointments… It is all very exhausting! Anyway, here are the news for what’s been up with me.

On March 18th I had my very first dentist checkup. I was happy to go out in such a lovely day (finally the snow melted!) and I was blessed with having the same ambulance team that really gets me. We arrived at UMDNJ and waited a little while outside. The building looked a bit spooky, not like the others I’m used to go… People, you need more light! An old friend was nearby and could only stop to say hello from far, my photographer from the Little Heroes Project. Mommy did not recognize her right away, as she needs new glasses, and felt quite bad about that. Anyway, after a small wait a young doctor arrived to interview us and get my history. Then we were taken inside.

They kept me in the ambulance stretcher, and checked up my teeth and gums. Yay, Mommy and Daddy and NurseMashaela have been doing an outstanding job! My teeth were cavity free and very very clean. Since I already take vitamins with fluoride and have good dental hygiene there was nothing else to do. Daddy’s main concern about my two front teeth was dismissed for now (they were coming out when I was intubated last year in Spring, so they completely came out while I was in the hospital and were crooked because of the tube). My lower jaw is a bit over the upper one, because the upper one gets all the pressure from my bi-pap masks, but for now that is not a big issue. So, I’ve got a brand new Winnie the Pooh toothbrush and a tasty dental paste. It was a nice day with uneventful trips. Upon arriving home I had quite a long nap!

GOD: Thank you so much for all the people that help me, and constantly give me so much love! I am truly blessed!

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WELCOME SPRING & DR. BACH CHECKUP!

February went by without any commotions. My therapists have been coming and going, and I have been showing quite some attitude. Sometimes I pay attention, other times I simply don't feel like it. I have been a bit moody... The latest snow storm almost made me sick, but thanks to my flu and Sinagis shots nothing went beyond constant respiratory therapy and preventive care at home (gotta love Daddy and his dedication to me... he REALLY makes sure that nothing hinders my breathing!).

Last week a loan of a sensor-touch switch arrived, and it has been much better than the Microlight (which has been quite frustrating for me as I don't have much strength to activate the clicker right now... I do sometimes, but after much effort and I end up sleeping after loosing interest, or being very mad and annoyed).

Today had an appointment to see Dr.Bach and Lou. They were quite surprised to see how big I've got, and happy they haven't seen me in a whole year. They liked the mask that I am using during the day and covered some of its holes to optimize my breathing. My vent settings were 20 breaths per minute, 18 of pressure with sensitivity of 1, and they changed it to 16 breaths per minute, 22 pressure, with sensitivity of 2. So far so good. I also got a ESG test.

On our way back, a crazy guy crossed from side to side in front of the ambulance. We had to make a sudden stop, and it was quite scary, but no one was harmed. The guy just parked as if he didn't notice what he did... Some people are incredible, huh? Mommy ended up with a strong migraine and was off duty for the rest of the afternoon and night. Me... I simply kept on being happy, enjoying my Wonder Pets, and then having a nice nap. The night treatment went on smoothly.

This week promises to be a crazy busy week for Mommy and Daddy. Also, my beloved Auntie Gladys's Birthday is on Thursday! I hope I can get to be there virtually by phone. Godparents, pictures please! :)

God: Thank you for so many things that little by little You've let me accomplish. Thanks for helping all of us, and protecting us and guiding us through the high tides. Take care of anyone who desperately needs You, and let healing and love become a reality in or world. Keep us in Your hands. This week, I have a small favor to ask: Keep on giving Auntie the strength to carry on, let her be well so she can live many many more years... so she can move with us as soon as we get well established. I get sad when I think of Auntie beeing all alone in the island, but then I know You are always with her, making sure that she is allright... Grant her that birthday wish, that all of us will be together again. Amen.

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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