Wednesday, August 12, 2009


Wow! What a WEEK! Last week was full of excitement! So many good things happening to me is so overwhelming! I am so happy! This year I'm celebrating my B-day in style! Well... Let's start breaking down the main events. I promise not to disappoint! On Tuesday morning, TherapistPat passed by, and we had a good session. At the end I was falling asleep, after all I had been off the vent mask for 3 hours and the heat of these days is just too much! After the mask was on, I went to sleep. I have been using my wagon in my room, as getting outside to the living room is out of the question. Too hot, and i can't stand that kind of heat! So... I'm comfy in my wagon and in my controlled environment.

Just don't think that I do nothing! Nurse Masheila and NursePeronette keep me quite busy! They range me, talk to me, read books, help me with my flash cards, play with me, tell me the news on what's going on with the world, help me practice my clicking, and reward my diligent attention with more WonderPets videos. I got a package from a friend, and it had a brand new clicker! No more excuses! Thanks Jana! I promise to use it and abuse it! :) That definitively made my Tuesday. I got a nice quiet evening, and prepared for next day's outing...

On Wednesday I went to Children's Specialized for a fitting of my brand new wheelchair. It is so awesome! It is black with hot pink trimming. I was placed on it various times, surprising everyone with how calm and collected I looked. Mommy was really impressed with me, as I no longer look like a baby. That was hilarious. Like that was not obvious... Guess she had to see me seating up, very straight and proud, to realize that! I'm a big girl now! Yup. Well, besides that Kodak moment, the PT realized that my vent cannot go where the tray is, so they had to figure out where else to place it... And so the session ended with the promise that the wheelchair will come home with me in the next visit at end of month. The excitement left me exhausted, so I had a long nap when I got home. Very well deserved.

On Friday, the RT arrived with a nice delivery: My new prong/mask. Woah! This one is much better than the one I had been using! It is the perfect fit, and it is comfortable and stays where it is supposed to (and I look like I'm gonna go boxing!). It gets two thumbs up! Then the biggest surprise of the week arrived: My spanking new power bed! Yay! Finally I can get rid off that embarrassing crib! My new bed is like a Cadillac! So big! And so comfy! And finally I can get all my positioning treatments safely and easier on everyone that attends to me. It is heavenly to go into trendelemburg without much stress! And no more breaking Daddy's back! And finally I don't go into a sinkhole (yup, the old crib had a portal to Wonderland that always left me stuck in its middle). Yay!

The weekend was quiet, serene and happy. I definitively feel so good in this new bed! It goes easy on my back, and makes everything better. Mommy and Daddy are very happy as they see me happy. We had no nurses coming over, so the whole weekend was all to ourselves! And I love it. Nothing like getting the personal, VIP treatment that they give me. There's no one like Mommy and Daddy. That's why sometimes I give a hard time to everyone else... I wish they could be my only caregivers... But I know they have to make things happen so I get everything I need, so i give them a break... sometimes. All in all, the week ended up being perfect. Now this new week holds a bit of drama and adventure, as the countdown begins for the most important day of all: My Birthday!

God: There's a new kid that I heard of... Her name is Alaysha. She's at my homeland, and she really needs your help. Keep her safe, and let many people reach out their hands to help her and her mommy and siblings. Things back at home are getting really difficult for kids like me. You have blessed me with so many things! Bless them as well. May love, shelter, healing, and all the basics be there for her and for all the others. Amen.

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