Friday, June 5, 2009


This was an easy, breezy, beautiful week.

I went to the Technology Center to try out a stander. Woah! I was put in an almost-standing position, and surprised everyone with how tall I am! Yup, 3 feet tall. I loved it. The trial stander was too big for me, but the purpose as a trial was fulfilled. It will not be the brand I get, as they decided there was no point to having a stander that goes into sitting position. The thought behind that is that I’ll get sitting trials when I get my wheelchair, plus it will make it more feasible for insurance to cover (that vendor is REALLY getting on our nerves… each time he opens his mouth it’s just offensive). Anyway… So, it was all settled, and they will send for a Buffalo stander. Hopefully it will be approved and will arrive by Christmas…

On Tuesday, Pat passed by and we did some of the old exercises (always checking and trialing my developmental skills). This time I decided to cooperate, so she was very happy with what I can do. There, I made another fan happy. Yes, I select with my eyes. Yes, when you say a word and give me a choice of flash cards I know which one is which especially if it is an animal card (I love animals). Yes, I use my big fat thumb when I want to with the switch… it is just difficult to know what I’m doing if I don’t see it and it takes perseverance and overcoming my getting bored and annoyed to actually find a position that may work for less than 5 minutes… And yes, I love it when people read me books and show me the pictures (especially when it’s mommy or daddy… they are silly! They do this teamwork when reading… moving plush dolls and puppets and making me feel so happy and so loved).

On Wednesday the family psychologist was updated with all the plans and what’s been going on, especially about my progresses and the frustrations of waiting for my equipment so I can actually go ahead and make progress. Yes… the waiting game is so unnerving and tiresome! Everything is wait… The bed is in process for approval, the wheelchair is in process for approval… The stander ditto… We are crossing our fingers on all that, so I finally get what I need. My crib is getting too small for me (I’m a giant baby!) and the stroller that another family lent me is beginning to be too tight/small for me (so I always look like I’m hovering on it!)… Yes, I actually need my wheelchair ASAP. I wanna be able to at least visit a boardwalk or a zoo or the aquarium… An outing besides going to doctor appointments would actually be so nice!

On Thursday PT-Ellen passed by, and we did the mandatory exercises again. We read a book, used my fingers/thumb, and fall asleep… Sorry! I was fussy all day long, and mommy was thinking I might be getting a bit sick. At night I was well, but did not want to get to sleep… not even while watching Fantasia! I wanted to p-a-r-t-y!!! Yup, you got it right! I even started doing strange sounds with my mask. Well, mommy and daddy put an end to the fun, they changed the mask’s position and even the vent to make sure that everything was fine… Geesh, I was just having fun! Well… Back to being bored, I finally fall asleep… early in the morning…

Friday has been a bit of a hassle. I had a bit of fever in the morning, but NurseMisheila took care of it. The afternoon has been a breeze, watching Tinkerbell and being just chilling in the crib. Since I am not feeling so fabulous I’ll stay in my room today. No biggie, A/C and pillows and food and Tink… I’m all set!

God: Thank you for so many blessings! Thank you for helping mommy and daddy cope with so many things! Thanks for sending my way these new people who are caring so much about me! Thank you for keeping me strong and smiling! You have blessed me in so many ways! Let me do Your will, and show everyone that You are there and that You make Miracles happen Everyday! Protect and heal all kids that need you, above all those who have no one to care for them. Amen.

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