Aside from the sleep study, the pedi visit went well. Her lab work came back a little iffy, so he wants it checked again in a week. He said her potassium is a little low and her urine is diluted. He thinks it's probably just because she is still getting too much milk. Her sodium was fine, which is what he was mainly worried about in the first place. She gained 9 oz since last monday, so we turned her pump down another 10%. She's down to 25 oz a day now. We are aiming for a weight gain of 2-4 oz a week. We are going to probably take her to the WIC office weekly to weigh her until we get the food situation under control. The doctor offered to have her go there for weekly weight checks, but he's a good 25 minutes away, so it's just too much driving!
She still has her ear infection. I never did do the antibiotics. Last week he said her ear was "fire red" and today he said it looked "about the same, maybe a little better", but before he came in, I looked in it myself and it seemed just a little pink. If anyone knows about ear infections, please explain this to me! He didn't seem to care that I didn't do the antibiotics, which makes me think maybe he really didn't feel they were necessary, but tends to write scripts automatically for things like that. She's not horribly fussy so I don't understand why she would need it "treated" anyways. Don't ear infections usually clear up on their own?
She's in the 25% for length and still "off the charts" for weight, although she did come down a little. Now she's only 1 millimeter above the top line, rather than 2. LOL Her head did not grow at all and it's still falling off the charts. :-( She's definitely starting to have the typical "pear-shaped" head that a lot of brain-injured kids have.
The nurse gave me a hand-out called "Normal Development: 6 months old". Do they not realize this is extremely depressing? I can see how parents of typical kids may want one, to make sure their little one is progressing and if they aren't doing well, to know when to call early intervention. But we already know Charlie isn't typical, she's extremely delayed, and she's already in early intervention! I don't need a hand-out on what kids her age "should" be doing. I already hear from everyone else that she's not doing this stuff! Duh! Sorry for the rant. I think the next time I go, I'll politely tell her that the hand-outs are not appropriate for us and they just make me sad. :-(
Here's a list of what her daily activities "should" be:
Adores playing with rattles and squeaky toys (yeah right, maybe if she could figure out how to work her hands to grab them)
Sleeps through the night (did they read her sleep study?)
Usually begins teething (I'll give them that)
May prefer some food to others (um, she cannot eat at all)
May enjoy playing with food (if only she could have some)
Loves games like peek-a-boo and pat-a-cake (she just looks scared when I play peek-a-boo and she's too tight for me to bring her hands together for pat-a-cake)