Sunday, February 27, 2011

Deedee & Her New Proximity Switch

I have been struggling using the Microlight switch as I have grown weaker. Using the sensor switch has successful 75% of the time but still positioning so it is perfect so I can use it is a pain... Now, the new proximity switch is PERFECT! No hassle positioning, and it captures my thumb movements without problems. Finally I'll be able to actually enjoy my toys, and some single-click games, without having to wait much. Gotta love technology!


Saturday, February 26, 2011

Deedee & Her New Suspension Canopy

This is the new suspension device that Mommy and Daddy built for me. They used PVC posts, a small pre-made gate, and metal straps. They secure the whole thing bolting it to the back wall, and securing the device's legs to my bed's legs. They also painted it violet and white, following my specifications. Gotta love my minions!


Friday, February 25, 2011

TOBBI, Wheelchair, V-Day, and More

The BIGGEST NEWS mainly involve that I GOT THE TOBIIP20!!! It arrived on Thursday afternoon and Mommy and Daddy unpacked it all through the night. The post still has not arrived so they didn't touch anything, just reviewed what was in the boxes. I'm so excited! The proximity switch was included, as well as the ambient controller (so now I can turn on/off stuff when I want to). Mommy needs to redo the screens, making some changes that will allow me better eye navigation in the monitor's screen. It is just a small step for me, but a big step towards my independence and communicating people my thoughts, wants and needs. Hope the stand arrives soon, so it all can be setup during the weekend!

Besides this, I also have good news about my never-ending wheelchair woes. My Edu-PT brought a jolly ATP guy that will make some changes to the wheelchair chair, customizing it for my needs (AMEN). He will the deal with the headrest issues (find a good one that will be actually safe for me), and then he will help explore other switch options for actually getting a power chair base. It all will be in phases, but I am definitively looking forward to giant leaps improving the stuff I have so I can actually use it without being scared of it. Maybe we will target the stander later on, but for now the forced changes troubleshooted by Daddy and the Edu-PT have worked (even if it is not the best at least it solves part of the problems so I can use it). For now, the important thing is the wheelchair, and moving towards a power chair for even more independence! Oh, I see myself chasing Kali! That will be fun!

During this month Mommy and Daddy celebrated their 4th Anniversary. It's so cute to see them together, they tease each other all the time but I guess that's how they have fun... You know they can be very weird. I'm just glad that I have lived to see them together, and to see that their love grows every day. I hope someday I can actually have a happiness like that of my own. And I do not doubt it, because God has amazing things placed on my way! And since I don't stop, I will get them all one by one.

Classes have been keeping me happy. These past two weeks my teacher has brought musical stuff, and you all know that is my Achilles heel! I love anything about the music! So by now he discovered that secret. I have been a good girl, paying close attention to my teacher especially when he do crafts. I love crafts! I don't like messy stuff (finger paints), but I love crafts. Valentine's Day involved the creation of a very disturbing V-Day Guy... It is still tapped to my bed, but looks very freaky. Nurse Mashaela read two books about Valentine's day so I understand now that it is all about friendship and love. Now she is also drilling me... pardon me, reading to me... about Easter. Mommy got a book explaining things in deep, so I will probably get Mashaela to read that to me tomorrow. Gosh, I really need to learn to read... Hopefully with the Tobii I can get more help in that area!

I had my Synagis shot last week, and overall I've been feeling upbeat and well. My pediatrician prescribed yet another medicine for my face rash, and I'm trying it just because... by now Mommy and Daddy have tried many medicines and nothing have worked. Even the medicines from the dermatologist did not work... I don't know what is causing it, I just know I want my porcelain skin back! And I am making sure my team works to make that happen. I am a diva after all! I have an image to keep! And talking about image, I may have a special lady coming in to help Mommy with my hair. I know Mommy cannot be all for myself, now I have to share with Kali (yes, I said that word... s-h-a-r-e...). I still don't like it, but I know Mommy does a lot for me, and Kali deserves time too. So maybe this lady will bring back my neat cool updo's. I am not so fond of the one-ponytail look. My trademark is the two crazy-colored pigtails. Especially the pink hair! Again, I have an image to keep, I am a diva!

So... Tobii P10, wheelchair, hair... and health. And above all, so much love! I am truly blessed. I hope I can give back so much love and so many blessings... Little by little. I promise!

GOD: Thank you for making things happen for me. Thank you for lighting the way and illuminating Mommy's and Daddy's mind. Thank you for giving us all we need to live on. Thank you for making me fall in love with life each day, and for making my eyes smile. Protect my family, and friends, and everyone that needs You. I trust in You, and love You. Make of me an instrument of Your peace. Amen.