Not too much to update right now

Everything has just been a balancing act for the past few days. The biggest thing is trying to make sure that she's stable in her breathing. With her doctors, we're working on getting her off the vent at night. But it takes time and she'll do OK for a couple nights, then start to struggle. I'm pretty sure that Peanut's going to need a vent whenever she comes home. It may not be all night, every night, but she does need it.

She's really getting used to her speaking valve too! Unfortunately, she doesn't realize that I'm not joking now when I tell her she just can't be that loud. She has to take it easy cuz the force she does use to talk can do damage to her vocal chords if she's not careful. She somehow thinks that she still needs to force it so much, but she doesn't, the valve works just fine!

We're still waiting for the EEG results. Dr. K., one of the neurologists said that Dr. I., another neurologist, was going to start looking over the results. But it's 48 hours of video and results to look through!

OK, while typing this she got all excited and had me come over by her - she lost another tooth!! She's had a really loose one on the bottom for a few weeks now, and eating an apple really helped. It just came out. So now the tooth fairy owes her for THREE teeth!! But we're waiting until she's home to take care of that!

As far as going home, it really doesn't look like until after Halloween. Which is fine. They have a big party here, costumes, parade, trick or treating, the whole thing! So she's not going to miss out on anything, that's for sure. She does get sad missing out on the other things, even though she's having fun with things here. I think at times she just wants to be a normal kid. Even though she's never been a "normal" kid! Ask those who know her well, she doesn't do regular kid things! LOL!