pre mature




Causeway and Smithsonian Visit in the Mandymobile!

So, we got our handicapped converted van; Juandi was super diligent and it arrived in no time.  It is a used Honda Odyssey (looks like new) that has an automatic ramp, no second row seats for the stroller to fit and tie down hooks to secure the stroller.

Today we took Amanda on her first ride and outing in a VERY long time.  Since she turned blue and stopped breathing January 15th we had not taken her anywhere other than the Dr (well, only my parent’s home once for a few hours).  Before January 15th Amanda did not depend on her machines, before that day, she just seemed like a floppy baby, but after that horrible day, we realized why Drs kept saying she would die.  Now she absolutely has to have all her machines with her at all times, and transporting all of them while she was using them was a hassle.  This van will allow us to safely take her places and will allow me to go out with her without Juandi.

When we rolled her into the van she was asleep, but soon after she woke up and started smiling while looking outside the window and listening to her favorite CD.  We arrived to have lunch and my parents, brothers and niece were already there waiting for us.  We rolled her out, ate and took her around.  She saw two parrots, went to an ice cream shop, and saw Marifer riding the electric horse.  I worried she wouldn’t like the heat and get upset, but she didn’t…she was smiling and babbling the whole time.

Then we rolled her again into the van and went to the Smithsonian (I think this is the closest we have to an aquarium? If not, someone please tell me if there is a decent aquarium in Panama!).  She saw the tank where there were turtles and a shark, she couldn’t really see them but she enjoyed seeing the water.  She also saw the sea.  Then we took her to see some other fish and stingrays that she could actually see.  We took her BiPAP off for a few pictures, but she got upset, put it back on and she immediately fell asleep.  She sleeps a lot and I’m sure the heat and all the excitement tired her!  We rolled her back into the van and drove home while she slept and snored the whole way!

This was such an important day; I want Amanda to experience life as much as SMA allows her, and since January I felt guilty that I wasn’t helping her live a full life…but this day proved that we can do it, it took away some of our fears, and it is the beginning of much more things we hope we can do with her.



Mommy's view of Amanda

Having Lunch

Saying hello to Marifer


Getting ice cream for Marifer

Turtle and shark tank behind me!

The ocean! Btw, I've had my feet in the ocean when I was 4 months old and I didn't like it very much...I am willing to try again though!

Fish and Singrays!

With mommy and daddy



1 ping

  1. Maria Alejandra says:

    Que bueno que ya Amanda tiene más facilidades para transportarse!!! Me alegro mucho que haya disfrutado tanto su salida, está lindísima!

  2. Victoria Strong says:

    This is so, so, so awesome! I am choked up seeing all these pictures and hearing the joy in your words. I know this was a huge and wonderful day. So, so glad you got to do this with Amanda — and she looks amazing. Way to go guys. Sending lots of hugs.

  3. Lilia says:

    Que buena idea llevarla a pasear, se nota que la paso bien ! El animo es un contribuyente a la salud! Tanto para ella como ustedes, un abrazo de parte de Raulo, Amelie, Bea y yo !

  4. Carla Mae says:


    Planiemos para llevarla a ver la funcion de Steps. Solo un ratito a la parte de las chiquitas? De repente nos dan backstage pass y asi puede ver los disfrazes y a las niñas bailando.
    Me avisas si te parece buena idea…

  5. Carla Mae says:

    BTW… me refiero al ensayo del sabado, no la funcion llena de gente, etc…

    1. Marcela says:

      Me parece!!! Pero cuando es?? Creo que backstage serian demasiada gente alrededor de ella, pero al teatro si!! Buena idea, coordinemos ;)

  1. CARNIVALS » Amanda Cardoze says:

    [...] from Aspiration Pneumonia and we didn’t even have her special medical stroller or her van which allows us to get her out of the house.  So much has changed, in good and bad ways–more [...]

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