In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Sunday, September 26, 2010
ENJOYING FALL
What a week! I went on Monday to the Dermatologist, and basically ended up getting a prescription that Daddy didn't realize we already tried for my rash... been there, done that, only witch hazel works. I should be back within a month to see what else they will try... if they dare...
On Wednesday my OT passed by and we had fun using his Iphone to read some stories and play. I heard something about an Ipad, but maybe that will be a mission for the big red fat guy in December or the three kings next year. Thursday was a happy day as I got the Tobii mount so I can finally start using it... when the screws to attach it to the monitor arrive. The vendor promised to pass by on Thursday and so he did. He put it in place, and was surprised at Mommy's customized board for me. Hey, I know I am very lucky I have my own techie/programmer in the house, 24/7. On Friday the PT passed by and woke me up to musical exercises (Tio Nobel anyone?). I also started using the Tobii, and I showed Mommy and Daddy that yes I understand this stuff... The new setup using blinks to select is much better than the hovering in place, at least for me. So now it is a matter of exploring all the pages and learning my way around! At least I already have the yes and no location very clear.
The weekend has been fun, as I had a Little Mermaid marathon (I had no idea that Ariel had a baby!), and I expect tomorrow more training with the Tobii. I also heard that there are some works to baptize Kali, which makes me happy as I was baptized when I was 3 months old. It is the most important thing I have done so far! Hopefully she will get godparents that will lookout for her and love her as much as my godparents have done with me... I have out-of-this-world godparents that make sure I am allright. Thank you Maria and Sti!
So... This is short and sweet, but it sums up all my latest adventures. Please keep my Auntie Ednita in your prayers, she may have to battle cancer if things don't get as expected! That scares me a-lot! Pray for her, and for all the kids that got sick in these last two weeks... The back-to-school was harsh for many SMA kids. Also keep Uncle Sti and Nurse Carol in your prayers as both will have operations this week. May God grant fast healing and happiness to all who need it. Amen.
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