Saturday, September 19, 2009


Well, these past days have been something different alright! I've used my stander, although it is a bit scary (especially the getting in and getting out parts). Daddy flies me over to the flat stander, I get all belted up, and then I get inclined to 45degrees. So far I can be over an hour with no problems. When Daddy takes me off it and places me in the bed, I fall asleep real fast. It leaves me exhausted! But all in all I do like it. Seeing everything from a different perspective is a plus. And seeing everyone getting the wow factor because I am so tall is simple fun!

Now, the wheelchair is another story... The days that everything goes right I can be sitting at 45 degrees without problems... But somedays I just can't tolerate it. Last Monday I scared everyone. I was placed in my wheelchair and taken to the computer so I can practice my clicking, and five minutes later I started choking. Since the wheelchair does not tilt, I had to be unstrapped and taken to my room ASAP so I could be suctioned and bagged... I came back up really fast, but it was scary anyway. This is just what Mommy and Daddy tried to explain to the people who ordered the wheelchair... I need to go flat when I have emergencies. Being at home at least Mommy and Daddy and NurseMisheila move fast... but imagine if I were out... Imagine if by any chance I were in an elevator, where there is not even a chance to be placed over the floor. It is a simple big issue, as it is very life threatening. So... Now my minions will have to do something about this... I may be able to use the wheelchair within the house being very near my bed, but not outside. And even in the house, everyone gets very nervous about the what if's of an emergencies (when every second counts)...

Besides the Monday drama, things have been good. TherapistPat have been on time as usual, making me use my skills over and over. Yes, I am ready for new stuff. I am learning my colors, and matching my animals. I am also getting more vocal, I let everyone know when I want service, when I want attention, and when I want to be left alone. Daddy got some appointments for me, so I can try some eye communication devices. That should be fun.

On Thursday I got a visit from the Eye-Gaze guy. I tested the system, but my crazy eye movement made things a bit difficult. I have some nystagmus that at times shows and at times it is not too noticeable... but for a camera everything is obvious and calibrating the equipment was quite a task. At least Mommy and Daddy got some insight on other approaches to communication that they can apply in the meanwhile, and some ideas on how to make some things work. He promised to gather information on how to use the equipment with patients that has nystagmus. I also got a notice from TherapistTracy, she will come soon with a clock-like communication device... Hopefully that will bring something new to the table. All this attention floors me! But hey, it's all about me!

And so, the weekend comes in, and family will gather for some indoor family fun (movie-mania). Many blessings have been coming my way, some in the form of old contacts that are reappearing, and some in the form of people who are trying to help. My whole life is in God's hands, and I know that he protects me and cares for me all the time. Of all things I may say, this is the prayer that says everything that I feel:

"The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
he leadeth me beside the still waters.
He restoreth my soul:
he leadeth me in the paths of righteousness
for his name's sake.
Yea, though I walk through the valley
of the shadow of death;
I will fear no evil: for thou art with me;
thy rod and thy staff they comfort me.
Thou preparest a table before me
in the presence of mine enemies:
thou anointest my head with oil;
my cup runneth over.
Surely goodness and mercy shall follow me
all the days of my life;
and I will dwell in the house of the Lord
for ever."

Psalm 23 - bible - psalm of david


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