Day 20

Nothing really big happened today other than the fact that Blair took at real bath for the first time in what seems like forever- really only 20 days. It felt so good to have my little girl really clean. It was much faster and easier than a sponge bath and hair wash in her bed.

Last night, they decided to turn off her feeding tube for a while so that she'd be hungry enough to really eat something. After they stopped feeding her through her tube for a while, she ate a pretty good dinner at 6:30 and didn't throw anything up. The doctors still decided that they wanted to put some more food in her belly though the tube though. At 8:45, they started pumping food in her tube. About halfway through putting in the allotted amount, Blair said her belly was full and she didn't want any more food in it. The tech that was doing the feeding talked to the nurse, but the nurse said to go ahead and she'd be fine. About 3/4 of the way through it, Blair said again that she didn't want any more and her belly was too full for more. They finished the rest anyway and Blair said she didn't feel good. About a half an hour later, she threw everything up all over the place. When she was throwing up, there was so much force that her feeding tube came screaming out of her nose. That was the one part she was happy about in the whole throwing up episode. They decided to let her leave the tube out for the night and they'd make a decision about it in the morning. This morning, she's done well enough, that they didn't put it in again.

After her bath today, they also decided that she didn't need her vitals measured constantly, so they took the leads off of her chest- another cord off of her body. This afternoon, they took out her PICC line (the long IV type thing running from her elbow to the large vein going into her heart) and now all she's hooked to is the oxygen saturation monitor. She is doing awesome. She stayed high on her saturation last night and they said if she was going to have a problem, it would likely happen during the night. It feels like she's over the breathing problems.

They're working on weaning down some more of her medications and if she does well through the night and tomorrow, we could be going home tomorrow night. I think this should happen no problem. We'll see though, she's surprised us before...

Blair is doing so much better with her physical therapy. Today she will sit up on the edge of the bed herself for a pretty long time. She's still pretty shaky, so I don't let her sit there when we're not right by her, but she's holding herself up. She's also doing a little better standing and walking. She can confidently stand while holding on the bed or the chair and she's requiring a little less support while walking. It's been interesting watching her learn to use her body again. For some strange reason, when she stands, she feels like she needs to lean back really far and she's totally off balance, but she doesn't realize that. I think that with a little more time and a little less medication, she'll be getting around by herself. I'm still pretty nervous about the stairs at home though. I think she'll be sleeping upstairs in the room next to us for a while, not in the basement with her brother.

My cousin Dawn came over today and brought the kids some cute books and stayed for a great visit. She is so awesome and so thoughtful and I love anytime I get to hang out with her. It made a long, uneventful, would be boring afternoon, fun.

Blair played with toys, play dough, and read a ton of books. She loved ordering whatever she wanted to eat whenever she wanted it and getting all the juice and slushies she wanted. She also discovered chocolate pudding. She hasn't had it before, but the word 'chocolate' made her want it and she was ecstatic about it. It was pretty funny to watch.

Her voice is getting better and we can understand most of what she says when she tries to talk loud. The last few days of playing with her non-stop have been pretty fun. If only we had her brother here...

A cute girl after her real bath. She's loved playing with the stethoscope and a syringe. She's the doctor to her daddy and her stuffed animals and dolls and they need to be checked often. She also likes looking like a doctor in her special hospital clothes.

Blair and Dad enjoying some of the treats that Dawn brought us.