naughty Eve

I'm sorry I haven't posted in a while. I've been really lazy about it. I think partially because I've been so busy, but partially because I've been in a funk. This kind of thing hits peaks and valleys for me. Lately, I've been pretty sad about what Eve misses out on and what she ought to be able to do at her age. But....just as I get down about her atypicality, she does something very typical of her age. Eve got in trouble at school. Apparently she was touching a classmate during circle time. When the teacher redirected her ("Ah-ah. Keep your hands to yourself. J. is listening and learning."), Eve stuck out her bottom lip and started to cry. She had a little fit because she got in trouble. I love it! What a little princess. She's so darn bossy. She can dish it but she can't take it. Mostly I am happy that her teacher treats her like any other student and removed her from circle time until she could get herself together. Jim and I had a great laugh over her being naughty.

Let's see....other news. I heard from Dr. Shoffner's office. It should take another week or two until her DNA sequencing is finished and sent to his desk to be written up. So.....maybe I'll hear something by the middle of March. Ug. This is taking forever.

Here are two snapshots from this weekend. Enjoy!

GI update

Eve and I went for her postop with the GI doc yesterday. He thinks she looks good. I have to call his nurse and set up an appointment for getting her tube changed to a button - maybe around late April. He said they'll just give her a sedative, cut the tube, pop it out and put in the button. Done. No overnights, no general anesthesia. In the meantime, we talked about the feeding pump that we run overnight with her. I asked about bolus feeds (larger quantity all at once as opposed to drip feeds - 8 oz over 10 hours) and he said that is fine to do. So now, if we think she needs more liquids, we can give her a couple of ounces of pedialyte over the course of 20 minutes (or whatever time if would take a kid to drink it). Or, we can give her a few ounces of formula through the tube if she didn't eat well at meals. I like this idea for 2 reasons:
1. The pump is a PIA
2. I worry that if we drip feed her formula overnight, she won't be hungry in the morning to eat a good breakfast, and then will be hungry until lunch.
But mostly because of #1. So, we're going to try bolus feeds for a few days, and then if it all works smoothly, we'll give back the pump and IV pole.

Eve has been sleeping GREAT, btw. Being on her stomach has made all the difference in the world. Oh, and there is a new little girl in her class. Cute as a button. Apparently Eve doesn't think so. The teachers say she's jealous! Totally not surprising from my little diva.