January 12, 2008 - She be Trippin!

Okay, so today was Brianna's first day on Baclofen, and I have to say, she's such a sweet baby, but I couldn't help but laugh! She was so clearly on a drug trip! Her eyes were wide and glassy, as if everything were passing in blurs and she was just trying so hard to capture one image in her field of vision. Going from light to dark, her eyes were wide, as if in wonder. She couldn't stop laughing and squealing and chattering! Sarah felt so awful seeing her on it, and wants to stop giving it to her. But I know she might benefit from it. Even if it does send her on hallucinogenic trips for a while, we have to try it. As long as she isn't unhappy, and as long as it doesn't cause her to back slide as far as progress goes, then I'll keep going with it, for now.

In other news, she's STILL trying to crawl. Poor baby has rubbed a raw spot on her belly, as well as on her knees. It really breaks my heart. With her feeding tube, we have to tape down the extension to keep it from coming out, which means her skin is already sensitive and thin from that. If you add the abrasion caused by the carpet, you've got little bloody welts on her belly, and it's really heart breaking. The good news is, though, Caitlin had a suggestion. We already have to call her Dr. on Monday to talk about having a scan done to see if Brianna's fundoplication came undone. I want to talk to her doctor then about possibly having a mic key button placed instead of the bard she has. According to Caitlin, the mic key is a lot better. She has never had issues with leaking or the extensions coming unplugged. Which is the whole reason we tape Brianna's extension down. If we didn't, even with the long term feed/right angle extension, she comes unplugged. We'll see what the doctor says. But thanks for the tip, Caitlin!