Monday afternoon

Emma Kate did well overnight, but had another mysterious vomiting episode after phenergan and before her methadone dose. These are becoming more than just a nuisance as she is at such a high risk for complications from aspirating such nastiness. We've got a call in to the GI doc at Wake Forest to get his take on this, since today is the 3rd day from discharge and none of the 3 meds he prescribed seem to be solving the problem. She's still doing great otherwise- she is still hard to keep up with, but she definitely still has weakness and tires easily. She has to breathe so fast just being awake and still or moving a little bit, it takes a lot of effort for her.

We had a busy morning- our appointment with her pediatrician was at 9:40 this morning, and it took quite a bit of effort to get everyone ready and out the door, taking several meds with us for the road. We had a long visit with the doctor, going over all the meds, what the plan is, and what she is doing. He had a hard time appreciating her lung sounds because she was making so much noise sitting there. He judged by her brightness and activity level that she was doing well, and reinforced strongly the importance of not letting her get sick, and the risk of aspiration. I talked to him about nursing, and having one more doctor stress to me the potential serious complications she could have if she aspriates *anything,* I have decided to take the hard road and not allow any more nursing until she is deemed safe by a swallow study. As time passes until then, hopefully she will also have time to allow more healing and stabilization of her airway, and this will hopefully decrease the risk at least a little bit. It's hard to deny her, and I already miss the cuddling, but it's a small price to pay to increase the chances that we pull through this without any more glitches...

Emma ate a little bit of breakfast and had some yogurt at lunch, with a few tiny bites of sweet potato. She gets tired very quickly when she is eating or swallowing, so we're trying to take it easy on her. I'm surprised she doesn't have more of an appetite, since her feeds get cut off at 5am and don't start again until she falls asleep around 2 or 3pm, you'd think she'd be hungry and wanting meals and snacks, but she's not quite there yet. I'm just glad she's showing some interest and having a few tastes. Hopefully she'll continue to come around for us.

On the way home, Mommy got a flu shot (and now has a really sore shoulder...), so now we're all working on our immunity. Luckily there's not a lot of it going around here yet, so hopefully we'll be well prepared if it does. It's incredibly cold and windy here today, and tomorrow is much of the same, so we're not too disappointed that we're cooped up inside these days.