Liliana Sue

Sorry for the lack of posts, I'm trying to keep up with things between home and work. Unfortunately, the blog takes the back seat somethimes. Please be patient and check back frequently because you never know when I will put up something new. Everything is great here. Lili still continues to amaze us every day. I will post more when I get a second. Hope you enjoy!

Ok, here is a quick update for the last couple of weeks:
It's been almost 2 weeks since our usual doctor visit. He decided that Liliana was doing so good that we would not have to come back for a whole month. At the visit we decided with the doctor on Lili's new CPAP weaning routine. We add an extra hour of CPAP every week until we reach the goal of CPAP from 8a to 8p. She is doing excellent so far. We also are trying to feed her over a shorter amount of time. We increased her rate so that she gets fed over an hour and a half instead of 2 hours. This gives us a lot more time to do things with her in between. She has been spitting up quite a bit, but personally I think it has nothing to do with increasing her rate. I think it's just because she is still gagging on her oral secretions. Lately when I see her start to gag, I suction out her mouth and that seems to keep her from spitting up...sometimes. We also had a visit this week with another one of Liliana's doctors. He will be helping us to improve Liliana's muscle strength and control among other things. She was so excited to be out of the house and see so many people for that visit that she decided to stay up the whole time. She didn't fall asleep until we were on our way home. At that visit, she also got fitted for new foot and hand braces. This was not a moment too soon as she is getting too big for her old ones. She continues to do new things every day. Her teacher was here this week and gave us a lot of suggestions on things to do to encourage her brain development. She has gained a lot more fine control over her hands. She is gaining more strength in her neck. Her legs continue to kick like crazy. And she continues to be one of the happiest babies in the world. Good for you Liliana, we love you so much!!!










I have to post this in case some of you do not read the coments posted. I put the pictures up for a couple of days without any explanation and got the following post, I'm not making fun of you Ann. I just think it is funny because I did not explain the picture.

"I love the picture with the hat! She looks so happy and she seems to be a ham for the camera."

Actually, I was being the ham that day. If there was a picture of me from that day you would have seen me with that "hat" on my head. It was actually Lili's shorts or whatever you call them. We had them off of her because she was hot and I remember thinking to myself, "I wonder if those would fit on my head". Shortly after I wore them, we put them on Lili's head and snapped a picture.

Update 6/11: I guess we do have a picture of me with Lili's shorts on my head.