In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Tuesday, August 30, 2011
In a week and a half...
Camp is over... now what? Well... I prepared myself for a spectacular experience! My birthday! And it came... My Godfather came from Florida, and we celebrated with those who care so much about me. There were many plans laid out for the next two weeks, as I wanted to do so much before classes started! Well... As the saying goes "Uno propone y Dios dispone" which translates to "one proposes and God disposes". All is summed up by three things: Earthquake, Hurricane Irene, and illness.
EARTHQUAKE
Well, nothing so big here in Newark but big in terms of it never trembles in NJ. It was all over the news, people were really scared... Big drama for a whole week. The good thing is that everyone got to revisit the what do do lists that prepares in case of a quake... The bad thing is that people got to extremes... I know that I was born in an island that shakes a lot. What we felt here was nothing compared to what my folks have experienced. In a way it is good that my folks know how it feels and what to do... but here the "natives" became headless chickens for a while.
HURRICANE
Hurricane Irene... Just by saying Hurricane should suffice. Here in NJ nothing mayor has strike since 1936... So... Coast and areas that could get flooded were evacuated, and it was mayor pandemonium. I got scared because of my specific need of constant power for my ventilator and pulse oximeter... But God kept me safe, and thanks to Him we didn't get flooded and lights were not out in our area. We know many people suffer many damages, many areas got super flooded and electric power is down right now in nearby cities... My parents say we were lucky Irene was Cat1 going into being a Tropical Storm and taking to land... They say it could have been beyond dangerous for us if it had stayed Cat 2-3. I hear their tales of Hurricane Loiza, Georges, Hugo, Hortense... and it is all very scary. I am thankful and grateful that everyone we know is safe. God is good and merciful.
EVIL ILLNESS
Me being sick... Ugh! It all began a week ago with what seemed to be a stomach bug. I had a bit of bile coming up when my nurse suctioned, but after Pedialite and Tums my tummy got better and I had no reflux at all (which is my normal). Well, a day later I started to have a high fever, followed by high numbers in my oxigenation and heart rate. After that, it all has been awful! I've been fighting off this bug since last Wednesday, started antibiotics on Thursday, and even saw the Hurricane Irene come in and go during the weekend... And I am still sick. I know that for me a simple cold is a two to three week nightmare, but come on! Mommy and Daddy considered taking me to the hospital on Monday, but then I did so good during the day that the idea was put on hold.
Luis, the RT, came in on Monday afternoon, and after checking me up withdrew the possibility for pneumonia and just reinforced we should just keep up with what we are doing. So... I get respiratory treatment every four hours, and saline nebulizers before them. Plenty of percussion and CPT followed by cough assist and deep suction sessions. I get so beat after all that! But I know I need them, so I don't even complain as I usually do. Daddy got n touch with the doctor during the night to follow up on me. I'm still in close observation... My home is run like a hospital. I'm glad we've stayed, I get some real cat naps between the sessions.
By Thursday it will be the 7th day... on Sunday it should be the last day for antibiotic. I hope by then all this ickyness and crazy stats will finally subdue. I need to get ready for next week! I'm looking forward to the new school session. My favorite teacher should be back, and I'm looking forward to trying out the video-conference with the school. I hope things don't get shady... Mom and Dad are doing their best to try setting up all my services as I rightfully deserve.
Today my Godfather Steve goes back to Florida. I am so upset we could not hang out as we planned! I've been sick in bed more than a week, so all the projects we had planned went down the drain... I will try completing some by next week (like creating the solar system, and doing a mosaic picture... and a sequin art project...).
At least I got to hear him sing me the "Cheki Morena"! Now THAT was priceless! Don't worry Sti, I will complete them in your honor. And you better get ready to chat with me through video-conference too! Don't think that out of sight, out of mind. I may be a diva, but I have a heart too. And we all love you very much! You have not gone and I'm already missing you...
So... As you all can see, my life keeps on having quite some action, adventure, and drama! It is all as good as it can get.
GOD: Thank you for keeping me safe while all the chaos has happened around me. Thank you for blessing my life with people that really cares a lot for me. Thank you for protecting all of us through this bad weather, and for protecting so many families through the storm. Take care of everyone who needs you. Let no one go hungry or be without shelter or be alone... Thank you for carrying me in your arms always, sustaining me with your never-ending love. Help me overcome any obstacle, grant me strength, health and courage as always. Amen.
VIDEO OF STEVE's LAST DAY WITH US
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