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!


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