In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Saturday, May 28, 2011
ENDING MARCH
Almost reaching the middle of the year! Unbelievable! Well, I have been so busy that I have not been able to write too many details! My everyday is now quite full with school and therapies. The good news is that so far I've been able to keep myself healthy and "bug-free". The bad news... wait! I have no bad news! I am quite thankfful to God for that!
At school, I've been doing lots of reading and discoveries. Last week I filled up a big table of "smelling experiences" where I placed a happy face under the things I liked and an unhappy face under the things I disliked. So far I really dislike rotten fish and a herb. Everyone had fun with that activity. I also really enjoyed reading Jack and the Beanstalk. It reminded me of the seeds I planted...
There was an EIP reunion and things got ready for Summer and next Pre-K year. My favorite teacher will keep coming, increasing his hours. In summer days will be concentrated in 3 days of 3 hours, that sounds demanding... but I look forward to it. Those two days with no classes Mommy plans to fill them up with "field trips"... as long as the weather allows. I hope so... I really REALLY want to get out of here and discover new places. If I prove that I can do good outside, who knows... maybe school can be more feasible at the real school instead of at home... But first steps, for everything... Slow but certain. I hope that I can get to do some video-conference with school next year... Fingers crossed. Now I began practicing that with my Godfather who is in Florida.
The troubles with my wheelchair now includes that it is getting small for me... hopefully it can be fixed so it lasts a bit longer... Right now I really need a stroller to make outings easier on my parents... I would like to get a tablet so I can communicate while being mobile, as well as a portable pulse-ox... but I guess that falls in the category of "wishlist".
The weather has been really bad, with all these spores, mold and pollen in the air... And the hot today and cool tomorrow... What a weird summer! Next month we'll celebrate my sister's first birthday. That means my 4th birthday is also around the corner... Wow! Soon I'll be graduating from college!
So... that's the main news for now. I am enjoying good days with my family, learning a lot, and trying to do everything possible to run away from my shrieking little sister! I'm tolerating some of the Gabba Gabba madness, but I keep on being faithful to my beloved Wonder Pets and some VeggieTales... I love that I can now talk a bit more using the Tobii, so my people know what I want and how I feel. I also love that I can see the people that are far away from me, and that I can also learn even more through the Internet (I am hooked on National Geographic documentals... that Dolphin movie rocks!).
God: Help all the kids that have been sick and that have been staying at the hospital. Help them make it through, so they go home to their families. Keep all of us in your hands, and protect us. Thanks for all the blessings you give me and my family... I don't have too much, but I don't have less... You give me just the right amount of everything. Thanks you, Father! Amen!
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