She has eyes that open

For the first day since last Friday Ashley Kate woke up with the use of both of her eyes. Yeah! They are a little bruised from the all the swelling and don't look very sparkly, but she woke up able to see out from underneath both of her eyelids. The left one is still heavier than the right, but its open. That's progress.

She continues to lean her head to the right side and works her neck by rubbing her head back and forth across her shoulder. That tells me two things. One is that she is still having trouble draining the fluid and two is that she has figured out her own way of getting some relief.

She doesn't look great, but she definitely looks better than she has in days. The left side of her neck still has a heavy pocket of swelling underneath her chin and jaw area, but she is less puffy all the way around. I think its getting better.

She is up and dressed and out of the nursery this morning. That too is progress. The last few days I haven't been able to get her up until after 11am. She is in the middle of the family room and has a perimeter of toys surrounding her. We are tying to encourage her to get moving again and so I have placed absolutely nothing in her reach. She has to move to get to a book, a puzzle, or a toy. So far she hasn't budged. She just keeps signing to me that she want to watch a signing time DVD. That cracks me up. She tells me she's sad and that she's crying because I haven't put one in for her yet. I wish you could see her sign that she's crying. It is so, so sweet. I can't help but giggle every time she signs it when there aren't even any tears. I guess that means she's crying on the inside. Oh wait, now she is signing that she is "waiting, waiting, waiting". This girl is too funny! I just love her so much.

So without proof of a clot there isn't much that can be done. It could just be that she is struggling to drain because of all of the scarred veins, but the sudden way it came on is the indicator to me that there is or was some type of a blockage. Anyway, if she gets better thats all I'm concerned with. When this line was placed the decision was made to put Ash on 1/2 of an aspirin every other day to help prevent clotting around this line. Then the next day we were air flighted out to Omaha and things took a different turn. Honestly, I think that plan was forgotten about and so we are bringing it up once again. Aspirin is safer than coumidin and doesn't require the bi-weekly blood draws to monitor it. Its not good on her kidneys which already struggle from her required Prograf doses, but if it keeps her blood thin enough to flow past the line then it may be worth it for the remainder of the time we need this line. I don't know. Its just something Dave and I remembered them deciding back in October, but it was never actually started.

Today her feeds will increase to 55mls an hour and her TPN will go down a little giving her a 10 hour window each day. That too is progress. Its been a rough week, but I'll take any progress in the right direction no matter how small. Guess I should get going and begin that DVD. It's not really considered to be "vegging out" if she's learning to communicate. Right? I hope so anyway. Take care guys. Trish