Monday, April 7, 2008

And the rest of her pedi visit...

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)

7 comments:

Allison Shardell said...

See, I'm a little biased about the ear infection thing. Jocelyn has had so many ear infections (that we caught--and likely many more that we didn't catch) that when her ear tubes were put in two weeks ago, the ENT said her ears were full of scar tissue. She was also thought to have been deaf for quite some time (turns out, she just had fluidy ears), and may actually have some hearing loss still from the scar tissue. So for her, treating them and not treating them ended up the same way--very bad ears, a huge speech delay, and possible hearing loss.

But we don't know her history--we don't know if she has a family tendency towards ear infections. If generally, your kids don't have ear infections, Charlie's may go away on her own and not be a problem. If your son had a ton of ear infections, it may be one of those genetic deals...

So, not very helpful, eh?

I'm sorry to read about her sleep study--poor thing, she needs to catch a break!

Vanessa and John said...

Don't even read those, they are too painful. The nurse was asking me development questions at the last visit even though I had already mentioned she was delayed...but of course they don't have ANY empathy, but when I snapped at her she got the point adn left the room! Us- 1, stupid people-0!
As for the ear infection, there are a lot that are viral however, familes kind of push doctors to treat them. If she isn't having fevers, is uncomfortable, then it's probably ok.
Vanessa

Shauna said...

Thanks Allison, but no we don't have a history of ear infections. Adrian has never had one and this is Charlie's first. She did have fluid in both ears for a long time due to her secretions, but that has been cleared up for about 2 months now. If she had a lot of bad infections, I might feel differently. I just don't think one or two ear infections can do damage ya know?

Allison Shardell said...

Yeah, if you don't have a family history of them, I'd leave them alone. I really think there is a genetic component to chronic ear infections. If she doesn't have a family history of chronic ear infections, and she's not spiking a really high fever, I'd just let them go. It will probably do her good to have her immune system building itself up like this. :)

laila said...

Awwww, HUGS! It will get better and a huge LOL we also would go home with the typical child papers from our Ped...I was so depressed just at the thought of reading it that I just threw them away! hugs

Brenda said...

Ear infections are very painful so I never leave one untreated. I am not familiar with your daughter's medical condition, but is it possible that she is not able to express her pain? Is it possible that her ear pain affected the sleep study since ear pain generally affects the sleep of babies.

Shauna said...

Charlie is developmentally normal for crying. She has different cries for pain, hunger, boredom, "suction me", "you're making me mad" ect. I have no doubt she was in some pain. My concern with treating ear infections is with the over-use of antibiotics. I can't justify treating something as benign as an ear infection when she has (and will continure to have) much more serious problems to deal with like pneumonia and other infections.

I did squirt breastmilk in her ear though, so I did what I could to help it clear up. ;-)

Her sleep study was probably made worse by it, but she has those issues all the time (low o2 levels, apnea, snoring, ect) so it was something that needed addressed and corrected anyways.