March 4, 2007

It's Sunday, and I'm trying to recover from a week of not feeling too great. Mom and I were doing just fine, staying away from everyone else's germs, and then... Mom got sick last Monday and was in bed until late Monday morning. (She slept 14 hours - she NEVER does that!) She had the tummy bug, but she made it to work by noon anyway and kept at it all week. (She said she's almost normal now, but not quite 100%.) I didn't get the stomach problems, but I ended up with a rollercoaster fever, some wheezing and lots and lots of coughing and more nasty goo than normal. I went to the doctor on Tuesday, and while I was there, I had no symptoms at all - just to try to confuse the doctor. It worked. So I've just been under "observation" all week. I have to do Albuterol treatments every four hours for several days now, but maybe this will make me all better. I hope so! I really, really don't want to get pneumonia.

Dad ended up getting sick the other day, too. He was feeling fine and then - BAMMO! He started coughing and sneezing Thursday night and he hasn't stopped. Right now he's in the recliner, sleeping in front of the TV. I hope he gets well fast because he didn't get to snuggle with me at all yesterday. He was afraid to breathe on me too much.

Luckily, my big brother isn't sick. He has a sore toe right now (it's pretty bad), but other than that, he's the healthy one around here.

Last week, one of my favorite nurses came back to take care of me. She had taken a job at St. Louis Children's Hospital, and I was afraid I'd never see her again. (She's taking care of tiny babies in the NICU there - something she always wanted to do.) But she is now able to take care of me one night a week. I'm happy!

The other night, a new nurse came to train as a night-time nurse. Mom said it was kind of weird because she knew this nurse when she was a little girl. She said that it's weird having someone you knew as a "little bratty kid" in your house as a grown-up lady. (But she's not a brat anymore - she's a good nurse.)

I'm going to see the GI doctor this week about my "leaky button." We don't know why it's been so leaky lately, but some days it's so bad, the stomach acid eats away my skin and turns it really red. Other days, it's just fine and I don't have a single problem with it. I hope the doctor can figure out what to do because it's really bugging me (and Mom and Dad). One way they have tried to reduce the leakage is by venting my stomach before I eat anything. They attach a long tube to my "button." It has a syringe hooked to it, and they are able to pull air/gas out of my stomach. It's kind of funny to see the bubbles work their way up the tube. When they don't use the plunger to manually pull the air out, they leave it open and let me "burp" it out. It sounds really funny, and sometimes there's so much air, they have to cover the end of the syringe or it can pop out all over them. (I've gotten them a couple of times.)

When you have a feeding tube, things are just a little bit different, you know? People wonder what I "eat." Well, I get formula, water, juice and baby food through my feeding tube. I also get all my medicine through my feeding tube. I don't eat anything by mouth. My speech therapist is working with me to help me learn how to control my tongue. Maybe I will learn to make words someday, and maybe I'll be able to eat something some day. I have tasted a few things before. Mom or Dad will put something on their fingers and let me "taste" it. I don't know what to think about those things. I don't know if I like them or not because it's so different having that sensation.

I think I've probably written enough for today. I'm getting kind of tired now and might need to nod off for a few minutes. When I'm not feeling well, I take short naps during the day. (Normally I don't sleep during the day because I don't want to miss anything!)

Everybody take care out there. I love you!