Monday, November 1, 2010


It's me. Mommy has been slacking off lately, and has not kept you updated despite me being really busy! She went back to work full-time and more for a few days, so we had to rely on daddy and nurse Gemma to take care of things around here. Daddy is really good about that, but he has so far not shown any interest in my blog :-
I have had a great Halloween this year. For you who know me for a while, you know that Halloween last year set me off to status epilepticus and me staying in the hospital up until Christmas. So to be home, dress up, and have fun was a big change from last year.
On Thursday, Gemma and I went to the school Halloween party, me as a fire fighter and her a a nurse. What a great team we are! I really liked my costume this year after having been mitochondria for 2 (!) years, and no one realizing what I was :- I loved being a fire fighter for the day, and felt it was the perfect costume since I rely on them from time to time.  You can see some great pictures from the party if you go to photos.
Halloween came with nice warm fall weather this year. We went out for a long walk on Sunday to just enjoy the warm sun, and being outside. In the afternoon, we had a couple of friends coming to our house. I always enjoy having kids around, and they all posed with me before heading out trick-or-treating! I got to hang at home with mom handing out candy to all the trick-or-treaters. I like that job.
Sarah only told me that she wasn't happy with her choice of costume this year. She so wanted to be the Disney actress Selena Gomez, but when it came down to a costume, it wasn't the greatest. She had to wear a black uncomfortable wig. She was pretty annoyed when she realized that my speech therapist would be a "PJ girl". Sarah couldn't believe that she hadn't come up with that great idea! Going on a PJ party, AND collecting candy! She has decided that that's what we're both going to be next year...
I am doing well. I am on a break from infections, colds, and hospital stays. I am enjoying it very much. I do have a little bit more seizures than we all would like to, but we're in constant contact with Dr. C . I also got my cough assist finally (only took 7 months to get it approved...). It's a machine that will help me to cough. We're all trying to figure out how it will work, but I am sure it will help me as I get sick and prevent me from aspirating.
Next Monday night, I am going in to the hospital for a sleep study. We're going to see if I can move from a BiPap to a CPap. It's the machine that helps me breathe at night. The CPap should be a bit more comfortable, so I am hoping I am ready for it. We'll see, and I keep you all updated.
Lots of love,

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