Thursday, April 30, 2009


Mommy woke up being busy today. She spent the whole morning working on a detailed letter of medical necessity so I can get the right bed. Hopefully that will work. She sent it to my doctor, and now we are waiting for the outcome. Hopefully this will setup things so the Medicaid doctor stops being confused.

In the afternoon, we got a call that a new nurse was coming. Well, she arrived a bit late because she got lost. But strangely enough, something about her made Mommy get off the computer and go into my room to actually meet her better. Seems she got a good vibe, one of those 6th sense things she gets sometimes. Well, so far from what I heard (yup, I was feigning being busy with my Wonderpets but oh, I was listening to everything!), seems this one may be a keeper. I have the feeling Mommy and Daddy liked her. One thing is certain, I would really like to meet Yu. I’ve heard so much about him! I hope Carlitos don‘t get jealous back in the island.

Tomorrow, one of my favorite PT’s will come early. Boy, is she in for a surprise! NurseMisheila has been making me practice using the switch with my butterfly and even the monkey for the whole week! Yup, that Misheila is insane. She sings, she reads and reads and reads, shows me the flash cards, makes me move… Doesn’t she get I just wanna watch my shows? Gosh! Now I am forced to cut back on my precious hobby… What the world is coming to!

This has been a happy-go-lucky week. I even got some chinese orange sandals and a nice printed dress… Oh, and I almost forgot to mention it! I also got a Wonderpets t-shirt! That was the icing of the cake! They make me so happy… Each night before going to sleep, Mommy tucks me in with my three pillow-friends (Linny, Tuck, and Ming-Ming too). Yup, and then she reads me an awesome book where they go and help baby animals go to sleep. Yup, they sleep too… So we all go to sleep, and dream about adventures and teamwork! Yup, we are soooooo brainwashed! And we all love it. Mommy sings the song, and Daddy, and yup, me too!

It’s the little things in life that makes it so much worth it!


Well, this should give you an idea of what is what... And why Miss Deedee loves it. This is sewious!

Wednesday, April 29, 2009


The week has been a bit slow. At least today I had some excitement as I had two visits. The PT came in the morning, and then the OT came in the afternoon. Not that I have not done my exercises anyway, my day nurse gives me plenty of exercise, and reads to me, and shows me the flash cards… Yup, I get complete happy service while that one is around. We are joking around about cloning her, but who knows… desperate times call for desperate measures! And, really… It has been THAT hard getting to find someone like this one. I hope she sticks around for long. It is stressful enough handling crazy nurses in the afternoons if and when they come… Right now it’s off to the basic one day nurse, the other one that began last Friday didn’t make it after 3 days. Sometimes it feels like the company doesn’t listen to what we need… Well… we gave her time and we were patient… but you can handle someone that won’t talk or look at you? Gosh!

So, back to the therapists… PT session went well, hopefully she saw I have been busy working my muscles. The OT seemed a bit down with my lack of moving/grabbing too much. Well, since the long hospital stay THAT has been something we’ve been working on. Not that I don’t try doing anything. My strength is not too strong… I’m hoping that the L-carnitine starts helping me soon, at least giving me morte energy to keep trying.

At least everyone is noticing that I’ve been happier lately. Smiling more, trying to be more cooperative… You know, making my followers happier… Hey, if they are happy, they talk a lot to me, and read to me, and do more stuff with me… You know, it’s all about me! :P

Summer is hitting hard. Cold days followed by extremely sunny days and now drafty days… This weather is plain crazy. I prefer the stable sunshine in mornings and rain in the afternoons from my little island. At least you know what to expect. Here it’s all a big surprise… But, I’m coping in style. Mommy and Daddy found out some cool clothing so I keep on being divalicious in style. And even NurseMicheila pitched in bringing divalicious thinguies for when I am bigger. I am certain that there’s no way I’ll end up in What Not to Wear.

The wheelchair is in process… I have my date for stander selection in Monday. And now the thing with the bed drama is taking new shape… Don’t know if for the best or the worst. Well, Mommy got some info about a bed that is perfect for me, and that is more affordable than their old pick. Now we hope that Medicaid won’t start making a drama out of it… It was great to hear that this manufacturer has many SMA customers. Seems this is the right choice, as you are a face and a name, not just a number. Stay tuned and watch what happens…

The thing about the swine flu shivers me timbers! I’m so scared about it. But I know Mommy and Daddy are vigilant. It’s all just scary… Heck, even the common cold is scary for us…

God: Thank you for so many blessings. Thanks for a family that sticks with me no matter what, that cares for me and that loves me so. Care for those kids who are abandoned, who are alone on their own… Let them feel your presence, inspire them to know that Life is worth it. Protect them, and heal everyone that is sick… Guide us through the night. Keep watching over us. Amen.

Thursday, April 23, 2009


Today we went to Children's Specialized. I got a hip X-ray done, as I needed this to actually move forward to get a stander. Well, that was done, I'm more radioactive than ever. DrArmento showed them to Mommy and Daddy. Yup, I have the typical displaced hips you can expect with low muscle tone. Do not worry too much, it is what we expected anyway, it is normal on SMA kids. Nothing else besides that, so everyone should feel confident in moving forward towards getting my stander. The doctor just told us I have to stand like a super heroe (or military person at ease) so i have no problems. Piece of cake! (Oh, of course he doesn't know my secret identities as Wonder baby and Super Baby! Shhhhhh).

DrVelickovich, the pediatrician, checked up my weight and my ears. I'm perfect, thank you very much. Lungs are clear, and it is evident that my people take good care of me. Yay!

Tomorrow my people will call the Technology Center to move on with the wheelchair thinguie, and the stander thinguie. We are also in the process of getting the medical bed I need for my overall care (yes, I'm sinking in my crib and it doesn't help in anything at all!).

NurseMisheila seemed a bit sick yesterday and today, so Daddy dismissed her both days. Hopefully she will be completely well tomorrow, I miss her sillyness.

And that's exactly how it all hapenned... The End. :)

Oh... I almost forgot! OMG! Yesterday there was a Wonder Pets premiere! They saved the Lockness Monster! Way Cool! I got so excited! Well, me and my people! This show is so awesome! You gotta watch it! Really!

Tuesday, April 21, 2009

Latest Checkup: DrBach

Yesterday went to see DrBach as I had a checkup appointment. The transporting/ambulance team arrived just in time and were surprised to see me seated in the stroller. I was about to get my feed, but that had to be postponed. No biggie, I was not THAT hungry. The day looked a bit murky, but it was ok. I strained to look out the ambulance's window. So many houses! So many things moving! So many things to discover! I wish we could make many stops so I coud actually get to enjoy every view... Oh, well... We arrived at the offices building, and then a small adventure took place. We played Where's Doc? Yup, somehow we lost track of where we had to go, and oddly enough the people in other offices had no idea of where the NIV center was... or who DrBach was... Incredible... In the end we finally got a hold on him, and went to the 3rd floor.

We immediately went on to my appointment, no time to waste. This time Lou and a lady from MDA were there. Everyone keeps on being surprised by my beauty and my growth. Yes, I'm just 20 months... Yes, I have bewitching eyes. Yes, I am very smart. And yes, oddly enough I am able to do little BIG things like breathing on my own for short periods of time (like 4-9 hours, depending on my mood and on the weather). Lou went on to test my breathing volume rate, which was at 100. Everyone was very happy about that. While DrBach talked with Daddy, Mommy talked with the MDA lady (Megan, the program coordinator). Oddly enough turns out that of everything Mommy has filled up, she didn't fill up a registration with MDA. So Megan will do that and send information later on (just like FSMA). From what she told Mommy, sounds like FSMA has done an outstanding job at giving the services that MDA offer as well. I guess that's why it didn't occur to Mommy to enroll me in MDA. Well, the more options, the merrier. So that's done too. The visit ended in a happy tone, until next appointment in 6 months.

It was sprinkling a light rain on the way back home. I was looking sleepy, and almost fell asleep. Upon arrival, and being placed in the stroller, I knew that I would have my food and my favorite show on TV, so the sleep spell went away. I watched a prehistoric animals documentary (loved the otter ancestor!) and then Pinky Dinky Doo. The afternoon ended, night came up and finally I was catching some Z's in my crib. I'm happy things are working out little by little. Today I just had my behavior specialist visiting me. Tomorrow the family psychologist will pass by (mainly to talk with Mommy and Daddy). And on Thursday is my next outing: Children's Specialized. I'm going to have a hip X-ray to see how my hip bones are (to see if I FINALLY get a Stander), and then to checkup with the pediatrician to weight me and to see what she has to say about the medical bed that I need.

God keeps looking out for me, sending so many guardian angels! Life is good.


Sunday, April 19, 2009


A picture says a thousand words. Deedee seems to have some serious business in her mind... What is she plotting?

Of course Girls Rule! Deeva knows, and so she calls forth her charm to rule the world!

Deeva doesn't like to go to sleep... She knows that before catching Z's she must get her night respiratory therapy... She tries to ignore Mommy and Daddy, but they already know her tricks.

Deedee, our little diva... Lovely in white, a precious gift sent to us so our lives would be filled with joy and purpose.

A princess! Yes, but not just a princess... Deedee is a very intelligent, independent, outgoing, assertive, demanding, and stunning princess!

Well.. Duh! Of course this is cute stuff. It is our Deeva! And we love her and pray for her and do everything we can to make her happy. Our little miracle...


Sunday, April 12, 2009


Let us all rejoice as the Lord rise from the dead, and so Salvation and the promise of a new day for Mankind was sealed!

With that said, I can say I am truly rejoicing as I've been at home, with Mommy and Daddy, and today we celebrated Easter dressing up and eating out (come on, people, haven't you heard of "make believe"?). Yup, Daddy ordered some great Mofongo, I got my special drink "a la tube", and even kitty celebrated taking a nice sunbath. Of course we all get to the "now what" moment of the day, but today the day went really fast. Watching Extreme Makeover made us all realize how lucky we are, as the three of us are together. Really, sometimes that simple blessing goes beyond everything else. And on top of that we have friends that look out for us, and family that gives us our daily doses of drama even from the far away land! Let's begin with a small recap of what went on this week. Hold on tight, we DID have excitement!

Monday was pretty normal. Mommy began another class, Daddy got some information about some paperwork, and I relaxed and enjoyed the day.

Tuesday finally arrived. We were all VERY excited about what would happen: Visit to the SMA Clinic in NY. The ambulance arrived on time, and off we went to our newest adventure. The trip was shorter than we expected, a bit more than half an hour. We got to the clinic on time, and were assigned a room right away. I got so excited that stress made me sleepy. So, while I slept, Mommy and Daddy spoke to the geneticist, then to a pulmonologist, then to a nutritionist, then to a neurologist, and finally to a PT. I woke up around the nutritionist round… And Daddy got the hint that I really wanted to see Lion King.

We were blown away by the way the whole afternoon went. It really makes a difference when you deal with people who know about SMA and are there to answer questions if you have any, and simply to make things easier. The clinic will be a new valuable tool to take care of me! So far, everyone agrees I’m fine. Being under the care of Dr.Bach has definitively promoted a good respiratory care. So… The pulmonologist had nothing to add as my lungs were fairly clear. The neurologist made sure that all my information was on record for anything in the future.

Mommy talked a lot with the nutritionist, who assured her that I’m getting the right feedings with the right formula. She was actually happy about me taking Elecare, and added I am not fat because if you look in the chart… yes I am bigger than others my age but I am tall. And that changes the numbers. So… I am fine. Just the right amount of everything. I am simply Divalicious! The PT suggested a chair for everyday use, so I have the prescription for that. And if there is any trouble with the devices I need, they will take the reigns to move things… So it’s a matter of checking up what they are going to do in Children’s Spec, and complimenting it with the SMA Clinic. Sweet!

We came back home before dinnertime. The trip left us all exhausted. Although mostly it all was a big assessment of my case, what went on in Puerto Rico and what went on here… It all feels good. Perhaps now things won’t get stuck, in matters of what I need. The big picture has been narrowed to small bits that will move a bit further… And we are all happy about it.

Wednesday was Mommy’s Birthday! Daddy got cake and ice cream, so Mommy was very pleased. No meat, as it is holy Week, but she did request a Mofongo with Chicharrón for Sunday… Today NurseMicheila couldn’t come, so I met NurseKaryn. She is puertorican, and has family in our hometown. She seems cool, and pays attention to detail. She had to come back on Thursday covering for Micheila. We wondered if something bad happened to her, but no, she was back on Good Friday. I was glad to see NurseMicheila. I like how she takes care of me, hours fade away when she is around. Mommy and Daddy did some cleanup, and wondered about the church downstairs that celebrates GoodFriday with gospels using rock music. That was weird… On Saturday we all saw Stardust, and then I had my session of Wonderpets. Can’t live without them!

And today… We celebrated Easter because of its real meaning, and had some food, and rejoiced in being together and had more food… It was a good day. Now, to sleep, and to happily embrace whatever the new week will bring on!


Wednesday, April 1, 2009


Yay! I finally got an appointment in the SMA Center of NY, for next week! That's so exciting! Things are looking up now, getting a bit more fast-paced. :) There is a group called the Circle of Life that has been trying to help me, too. Whatever the outcome, thank you.

Mommy is dedicating this week to do the Spanish side of my website. She wants to make sure anyone from Puerto Rico has access to the right SMA information. We all feel that is very important. Other projects ahead, but each will be revealed in time. Don't you love the suspense? :P

Me, I've been having good days. This week has been great for me so far. I'm back to my routines, getting people to read to me, had mommy singing to me for long last night! Yup, it's all about me.