"The patient who questions the doctors, who doesn't accept their answers at face value, is the patient with the best prognosis." ~ Dr. Bernard Siegal
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In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Sunday, July 18, 2010
Friday, July 16, 2010
HOT HECTIC SUMMER DAYS
Ever since my new sibling came to our house, mayhem and chaos rules. She keeps crying and crying for everything… what a cry-baby! Me, I’ve been quite upset about this… No one ever asked me if I wanted to share my spotlight… And I hope she doesn’t get any ideas! Hmph!
I’ve been going to my usual appointments, taking care of meds for my eyes and checking my overall health. So far, so good. I love summer days, although my skin hates it… What to do, what to do… I wish I could actually go out so I can get a nice tan… this pale “Team Edward” look is so un-divalike! But I know, I know… respiratory safety first… At least I am sitting higher in my wheelchair, as you can see in the picture above… and that was for two hours, in the hot living room!
There are many plans ahead for me… Soon there will be a change of nurse services for afternoon and weekends, I’ll get a whole month to trial and master the Tobii P-10 (so it finally gets approved), my birthday is around the corner (next month), and school will come to me in September… August is already filled with specialists appointments so I’ll keep on with my “serious” travels… Any volunteers to take me out to have fun? Come on… Anybody?
GOD: Keep on taking care of me and everyone around me. Thank you for so many little blessings that actually mean a lot. Grant healing to all who need it, physical and spiritual. Help my Godfather bear his dialysis, and so on. Help Mommy and Daddy and me with little Kali, so we can all be patient and happy. And may Kali have as many blessings as you have granted me. Our lives are in your hands, our good shepherd!
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