Haven't had a chance to update for awhile. Does this sound familiar? :) It probably won't change for awhile, but we'll update when we can. We're really grateful for your interest.

Here are several bits of news since the last real news post about Hannah:

• Hannah has had another swallow study. If you don't know about these, the first one kicked off the entire sequence of events connected with her g-tube and digestive challenges. The first one, done January 2004, showed she was aspirating most of what went in her mouth. We had hoped the followup in September would show improvement. Instead, it actually looked worse. Almost everything that went into her mouth went in her lungs. So she will continue on the g-tube indefinitely.
• She's been put on several different high-dollar drugs. After the swallow study, she developed respiratory problems that almost went into pneumonia. Tests showed the presence of pseudomonus, a bug typical of children with cystic fibrosis. She doesn't have CF, but she has a lot of the pulmonary issues that CF kids have. Lots of snot, for instance. That makes a fertile environment for pseudomonus to grow, which irritates the lungs, which causes more snot, which gets a vicious cycle going. They put her on TOBI, an inhaled antibiotic that cost nearly $3,000 for a month's supply. Each application (two a day) took about 15 minutes, and she hated every minute of it. Next, they've put her on colistin, an antibiotic originally intended for intramuscular injection, but that they're having us put in her nebulizer for inhaling. Also nearly $3,000 for the three weeks she is supposed to be on it, also twice a day, but it only takes about five minutes to give (it smells like sour cream, too, which is odd).
• I think she's gotten her own wheelchair since we last posted. Well, I know she has gotten her own wheelchair, it's just the timing I'm not sure about. It has made a huge difference in being able to take care of her and take her places, because it has a head rest and padding and support mechanisms that hold her in the perfect way for her to be able to sit up and look around. She experiences more of the world because of it, and that is good for her.
• Hannah has been evaluated by ETTAC. That stands for East Tennessee Technology Access Center. They do a lot of things, but the practical and immediate thing is that they modify toys so that by pressing a switch, the toy will do what it is designed to do when a non-challenged child plays with it. It's not just nice for Hannah. It helps her to learn cause-effect relationships ("when I press this, it does that"), which is an important part of learning. The evaluation itself gave us a lot of hope, because this trained observer noted that when you asked things like, "Where's the ball?" Hannah looked at the ball, even though she couldn't pick it up. They also saw that she pressed the button on some of their test toys--not at random, either, but on purpose. It's a very important milestone. And, she pressed buttons on a gadget that can be recorded with words that will thus, in essence, speak for her. The observer believes that Hannah used the machine to ask for a hug, for instance. I can't tell you how much that means to us, and they are going to be working with us to get such a machine for Hannah.
• Hannah is going to get evaluated as a candidate for a machine to help her hearing. I'm not completely sure what it is, but her Ear, Nose, and Throat specialist thinks she might benefit from it (it's not just a hearing aid, but that's all I know right now), and she will get evaluated at UT Hearing and Speech on Nov. 22.
  

I'll post more later. Let's just say that, for the most part, we have had a lot of good news, although the challenges certainly continue.