In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Saturday, October 30, 2010
Deedee Using Tobii-P10: Two Videos
As everyone knows I have a Tobii P-10 as a month trial. The time is almost up, so I decided to record how I use it so people can believe that yes I can actually use it. Right now I do simple things with it (after all it's only been one month), but with this I show I can manage the pages, make selections by blinking upon what I choose, and answer questions for easier communication.
Mommy made a page set so my communication board was completely customized for me by her... It is always handy to have a techie/programmer/illustrator in the house! The start page gives me the following options: How I Feel, About Me, My People, Needs, Fun Stuff, Where I Want to Go. All pages have Yes, No, Can You Help Me, Wait a Minute and Back to Main Menu.
PART 1: COLORS & BATH
Before filming the video I had chosen My Fun Stuff, then I selected Painting, and inside that page I decided to do so using a coloring book and fingerpaints. Here you can see me in action.
PART 2: NEEDS MENU & MOVIE
Here I went to the needs menu and selected clothing as the room was chilled and I wanted to get warm. I also selected a Disney Princess movie.
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Monday, October 11, 2010
WASHING DEEDEE's HAIR
Here's a peek at how Mommy and Daddy (mostly Daddy) wash my hair... Yes, Mommy now has green hair (go figure!). This is what I have to deal with everyday... I tell you, these two are always bickering like that... It's not easy living with them!
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APPOINTMENTS GALORE!
These last weeks have been filled with assessments, assessments, assessments... I enjoy the trips but sometimes it seems that there is no point for the final outcomes are zero. In the end, Mommy and Daddy find the answers on their own... Now what do you think of that...
Last week I visited my old physician for a recap on how I am doing. I got a hip x-ray to see how my hips are. Just as expected, my hips are displaced. This translates to caregivers having to be extra careful when handling me, so I don't get hurt. I don't get too worried, I know that my personal team takes care of every detail. I got prescriptions for the changes my equipment need as well as for a special pillow so my hips are kept aligned.
From the dermatologist I got the same cream that my pediatrician had prescribed in the beginning of my face rash woes... I have used it religiously for two weeks straight and at least the rash is a bit more tame. Still the problem remains: It just won't go away. I know that for my next dermatology appointment they shuld have the results of the culture they did, so I can finally know what is going on in my face. At least the complete freckled tomato look is a thing of the past. I'm back to my porcelain self... with some reddish hints.
Last Friday I went to Valley Health and got acquainted with the PT there. What a nice surprise! I loved how the PT talked to me and handled me without any fear. That is exactly what I need. I hope I can go back soon, I am certain that she can help me a lot.
During the weekend my stye woes came back. Mommy found a way to treat styes using special goggles. Now, my eyes have been very red and getting styes because I have extreme hydration problems in my eyes. The main reason is that I cannot close them completely at night when I sleep. This is called lagophtalmos. Main problem is the cornea can get affected. So, a way of treating is hydrating the eyes with GenTeal or Refresh. This is good during the day, but at night I need a bit more help. Mommy found out about the special goggles in which you can do heat or cold treatments. They allow for the eyes to keep humidity while I sleep. Here's me using the goggles (yes, they are pink):
I have a set of goggles and eye patch, so the stye can get treated while I'm awake. Everyone was so proud of me the first time I used them, as I was not scared to try them on. Of course my parents were concerned, but after they put them on I signaled with my thumb that I understood the purpose of the goggles and that I would call them if I needed them... No need, I slept like a baby for the whole night. And so far, I love them. My eyes are no longer gremlin red. And the stye is getting what it deserves.
I thank God every second for all the good stuff that happens in my life, and for all the right people that he send my way so I get help and so I accomplish everything that I put my mind into. I trust He will keep on protecting me and allowing me to give others as much love as I am receiving. I always have so many reasons to be grateful, and to smile!
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Saturday, October 9, 2010
Sensor Switch Tests
For some months I've been using a Sensor Switch that my friends from the Technology Lending Center lend me. I have a MicroSwitch, but it is getting very difficult to use it. Ever since my last hospital stay back in February 2009 I lost plenty of strenght, so pressing anything has become quite an ordeal. My old assistive technology therapist wanted me to try the proximity switch and the sensor switch... So far I've only been able to test the sensor switch. It has been more successful than the MicroLight, although it is a problem to set it up right. After that is done, then it works most of the time.
One of my favorite toys is Buzz's Bubblemaker. Here is a picture of me using a sensor switch to activate it:
My main problem is always how to position the sensor so I can activate it with ease... It was the same story with the MicroLight switch that I have... What to do, what to do...
I also use the switch when I'm in my wheelchair or in my stander. Here's a picture of me using the Sensor Switch while I'm in my stander. You can see me using the sensor switch while playing an alphabet game.:
I was actually doing good today, my numbers were high and I played for a while with the switch. Afterwards I got my reward, a movie of course!
Here's a video of my stander session using the Sensor switch to play in the computer:
Here's a video of me playing with my Buzz Lightyear Bubblemaker using the sensor switch:
Hope you enjoyed this! :) Nothing like live-action Diva!
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One of my favorite toys is Buzz's Bubblemaker. Here is a picture of me using a sensor switch to activate it:
My main problem is always how to position the sensor so I can activate it with ease... It was the same story with the MicroLight switch that I have... What to do, what to do...
I also use the switch when I'm in my wheelchair or in my stander. Here's a picture of me using the Sensor Switch while I'm in my stander. You can see me using the sensor switch while playing an alphabet game.:
I was actually doing good today, my numbers were high and I played for a while with the switch. Afterwards I got my reward, a movie of course!
Here's a video of my stander session using the Sensor switch to play in the computer:
Here's a video of me playing with my Buzz Lightyear Bubblemaker using the sensor switch:
Hope you enjoyed this! :) Nothing like live-action Diva!
~
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