We had an ophthamology appointment yesterday and the doctor said that, yes, Charlie probably does have cortical vision impairment, which is very common in kids who've had HIE. He said she has made some improvement, but she's still moderate/severe (for her diagnosis, not compared to a typical kid). So that was a bit depressing. But we know she can see. And she's making progress in that area. And she's still so young and has ton of time to make more progress. I just keep telling myself, "It could be worse. It could be worse. It could be worse." Over and over. LOL
We got a stroller FINALLY! Boy, we needed one too. Charlie's kind of fat. LOL She wasn't doing well with baby-wearing. I haven't found a carrier that supports her well enough. We need to keep her spine aligned to prevent scoliosis and she just slouched in the carriers. So while I still hold her a LOT, I feel a bit guilty that I can't just have her on my hip all the time, like I did with Adrian. But she does wonderfully in her new stroller (a graco quattro, btw). It has a harness so I can sit her all the way up (she likes to look around!) and I don't have to worry about her flopping forward. We rolled up blankets and put them on either side of her to keep her nice and straight. We may have to start doing this in the car seat too, for longer trips. ALL of her equipment fits! This is the most exciting thing for us. She has a lot of stuff and most of it is heavy. Now, no one is going to be throwing out their back getting her to appointments. LOL She sat in her stroller for about an hour last night, while we were outside grilling burgers. She didn't fuss once! I still feel a little guilty just plopping her down like that but if she were crawling, she wouldn't be just sitting on my lap all the time, so I'm trying to come to terms with her having time by herself, just like a typical baby would. :-)
She's starting to bear some weight on her legs! Not a lot, and not for long, but she's definitely giving it a shot! This is something she has not ever even *attempted* to do! Just the other day, she was sitting on me, straddling my leg, and she put her feet down and pushed up a bit. Not enough to lift herself up, but enough for me to notice! Now I hold her up and give her a chance to push with her legs and she goes for it about 50% of the time.
She's still trying to smile. She TRIES all the time, it's just that her mouth muscles are so weak, she can't quite do a real smile most of the time. But you can tell when she's having fun because her lip twitches. Last night she did manage a few tiny smiles though (while she was in her stroller!).
We've figured out how to cut her suctioning down considerably! A few weeks ago, I decided to try just flipping her onto her side or belly when she coughed to let gravity help her get it all out. She did very well with this and 90% of the time when she coughs on her own, I don't have to suction her. So the other day I thought, Why don't I just make her cough and do the same thing rather than suction her?" She has a "sweet spot" that I tickle with the suction catheter that makes her produce a cough. Then I suction up what she coughs up. But I've been ticking that spot and NOT suctioning her and she's doing GREAT with it! She still has some upper airway congestion, but it clears her lungs and that's the most important thing. The problem with suctioning is the more you suction, the more you HAVE to suction. The reasoning behind this is that when you suction everything out, their body overcompensates and produces MORE. Also, some people believe it makes the child lazy about swallowing, which I'm not sure is true. It's a bad cycle though. But for some kids, you don't have any choice but to suction. But there are ways to cut back on it. We've been trying some things that have helped but I think this might be the key to teaching her to handle it better on her own. And hopefully her body will adjust and produce less.
Charlie grew about an inch and a half and her weight has stayed the same! So she's well on her way to thinning out.
I think that's about it for now!