Monday, January 31, 2011


I know, I know… I’ve been a bit lazy with the writing but it has not been by my own fault. Time is running out too fast. Mommy has been studying and me, well, I have been coping with many things to do.

Now my days are flying as well! My new routine includes waking up at 7:00AM every day from Monday to Friday. My day nurse Mashaela comes in and bathes me, then puts on my percussion for an hour. She reviews some basic stuff with me (like reading a story, singing the alphabet or using the flash cards to review some words). After an hour of percussion I also get CPT and then my respiratory therapy. By 9:00AM I am ready for the day, and at 9:30 my teacher arrives. Mr. Farina always has something new to do, and I love that! He stays for an hour, but after he goes my dear Mashaela keeps on reading until midday. Someone comes depending on the day… PT Martha, OT Bob, SLP Adam, or OT Ross. During the afternoons I am really tired and get a two hour nap, and usually I have the attitude of “ leave me alone” as I don’t get to watch TV until 4:00PM, and that is the thing I really like to do… From there I usually get to watch two movies, and in the night someone may read a story or two. By 8:30 I’m getting percussion hour again, so at 9:30 I get my night respiratory therapy and go to sleep by 10:00PM. This is my weekday schedule… I’m not too happy about it as it feels like I’m always on the run with something to do… It is very tiresome! But I do enjoy the busy mornings… I love learning something new each day.

So, the year began with new waking up routine as well as a bad case of sinus. I had a sinus infection by the middle of January that put me off schedule in everything for a whole week! I feared I would end up in the hospital, but my pediatrician prescribed antibiotics so I would not be put at risk in ER. The first five days were very taxing, my whole body ached, and my head… Oh, my head! I had so many headaches and migraine! And so much head soreness! I could not even watch my videos! I just wanted to be left alone and to close my eyes… light bothered me, and the sinus pressure was driving me crazy! Thank God that the medicine worked its magic and so it started going away. Mommy and Daddy took good care of me… That week there was a snow storm and the nurses could not come. I don’t fear much, Mommy and Daddy always know what to do. But by now I am really wary of snow… It’s been snowing so much! And that’s why I get all sinus problems. Can’t wait for the snow to end!

January just began and it also just ended. It is incredible, time is flying because we are all so busy! I am just glad that all in all this was a great month, and that the year began with happy people around me. I’m still fighting for the assistive technology stuff that I need (the Tobii), and for the neck support and bed bath… And soon I’ll have to fight for a power wheelchair… Fights never stop, but one thing is certain: I am very glad that I am alive!

God: Thank you so much for taking care of me at all times, as well as for taking care of Mommy and Daddy and Kali. Keep watching over us, as well as watch over so many people that need you! Bring peace to those families that have lost their kids to SMA this month… I know that all of them are dancing and flying and playing around You, but it is hard for their mommies and daddies and siblings… God, thank you for allowing me to have so much love around me! Let me give that love forward… Amen.

Monday, January 3, 2011