Updated: Jan 15, 2019
Tuesday, October 31, 2000
HAPPY HALLOWEEN!!!! Today marks my first official holiday. I dressed up like a pumpkin with orange Halloween booties and a bib that my Grandma Brockhaus brought me.
I had a really restful and comfortable day today because the orthotics guys brought my new ortho board last night, and it fits really well. They did a super job and even added some new features like arm rests and cushions around my head. The nurses covered it with a pillowcase so they can change it every day, and it won’t stink as bad as the last one did. The orthotics guys gave Mommy and Daddy my old board to save. Someday I will be able to see just how small I once was!
My food intake went up to 27 cc every three hours today, and I have been keeping most of it down. My ventilator settings have stayed the same as the last couple of days, which means that they haven’t sucked any blood out of me for over 24 hours. My feet are feeling much better since they haven’t been poked for a while. My ENT doctors are coming tomorrow morning to put in a new trach tube. They are going to try a standard length 3.0 mm diameter size (my current trach is custom length 2.5 mm diameter).
I got a new bunkmate today at the end of my row; a cute little girl that also has a cleft palate. Mommy says it’s a good thing I got rid of that stinky ortho board because she wouldn’t want to hang out with me if I’m smelly!