Wednesday, September 21, 2011

Strong and Determined

The Chinese attributes for the Morningstar Lily, which our Lily is named after, are strength and determination. Lily may not be able to talk, she may not be able to walk, she may be months and months behind her peers in her development, but this little girl has so much inner strength and determination, she blows me away.
Today we started out very early with appointments. First we went and picked up her new braces - yeah! We are very happy with them, we are looking forward to working with her in them.
Then we went to get fitted for the take home EEG. Basically they took goop and band aids, stuck 25+ electrodes to her head, and mummy wrapped her head with gauze. With a big cord coming out the top of her head attached to a little computer pack we were supposed to go happily on our way and proceed normally through the next 72 hours - haha - real funny!
We actually did pretty good at first. Lily even had an awesome therapy session. We came home and had dinner, but come time for bed the S & D kicked in to overdrive. Lily was bound and determined that she was not going to go to sleep with those things on her head.
Mike had his hands full while I was at my EMS refresher class. By the time I got home it was after 9:30 and she was still wide awake, but taking a break from her attempts to dislodge the electrodes. I wish he could have taken video of her because I know some of you will just think that maybe Daddy didn't know how to put her to sleep, but that is only because you have never seen this girl when she is on a mission. When I did get home she had already managed to get all of the gauze and tape off and was working on the electrodes themselves. Imagine a writhing baby crocodile, a very, very mad baby crocodile. She refused to let Mike change her clothes or even touch her head, except for when he told her he was just going to take some of the gauze off. Hmmmm......this girl knows what she wants.
Mike had managed to call the clinic's help line by this time and they said just take everything off because if the electrodes are moved or not seated properly the test won't work. So we took all of the stuff off. Washed Lily's hair to get all the goop off and she went right to sleep.
Defeated by the strong and determined one. We are declaring a temporary vacation from all doctors and all doctor's tests. Mike and I pretty much feel the same way Lily does right now. We're going to bed.