Tuesday evening

Emma Kate slept pretty much the whole day yesterday and had a few hours spread through the night that she was awake. She was up around 7 this morning and ready to go again- she's so much fun in the mornings, she's very active and playful, and nearly back to the regular Emma Kate at that time. She's able to walk just having one hand held, although she still wobbles a little bit, she's doing great. She's trying to climb up onto the little sofa thing in the room and the high chair as well. She is LOVING seeing the helicopters come and go- the pad is out in front of our side of the hospital, and we can always hear them coming. She's learning a few new words now actually, and is getting better about saying "please" which is great. When she starts to get tired, she definitely gets noticeably crankier (I swear we didn't bring a "2 year old" to the hospital, but it seems we'll be leaving with one...) and she can really whine with her voice being so hoarse... but honestly we're just enjoying all of it right now and are grateful to have it to deal with at all.

The speech pathologist came by again today and Emma Kate took some yogurt, applesauce, and thickened apple juice. She did really well, consuming almost 2oz of the juice without any outward signs of problems. The speech pathologist even let me nurse Emma Kate while she was there, and she did great. She did choke once but it was related to her breaking her latch a little bit I think. She has been begging to nurse for a few days, as it is a huge comfort thing for her. We're planning on doing another swallow study Thursday or Friday, hopefully we can schedule it early in the day when she'll actually be awake and rearing to eat. I have a feeling they're being extra cautious because her condition is so unique, but I hate the thought of holding her back longer than necessary.

We met with the pharmacist this morning and agreed to a slightly less conservative taper schedule for her methadone and ativan- instead of reducing one or the other every 3 days, we're going to do it every 2 days for a week or so and see how she tolerates it. If she does well, we'll try reducing one or the other every day so that each drug is reduced every 2 days. It's hard to anticipate how she'll respond- the methadone has such a long onset time and lasts in the body for a while, so we have to give enough time to allow her to show us if the reduction is too fast and we need to back off at any time.

Gretta has done really well, and is holding her head up when we carry her! It still wobbles around some when she tries to move it, but she can hold it really steady in one place. She's got a sad little chapped chin from all the time spent over everyone's shoulders, we're trying to keep some lanolin on it, but the cold windy weather doesn't help either! Luckily she only gets outside when we're going to or from the car in the morning and at night. It actually snowed here a few days ago, and this morning it was only 25 degrees out!