Monday, April 25, 2011
Really, more than anything, this weekend has showed Brian and I what an amazing daughter we have. She honestly never gives up. I think I would have by now. Her EEG shows she is not just having seizures throughout the day with normal brain waves in between. She is constantly having epileptic activity all the time. Its like background static that never goes away. How is she even able to do the things she can do now? I have no idea except the grace of God and the resilience He has given her. You can pray for resilience for me--there are days I want to give up. Not many, but after a busy weekend filled with travel and hospital and a busy Easter Sunday this morning feels like a good day to give up. Its Monday. Its dark and rainy. Its almost 9am and I am the only one up in our house. Instead of giving up, I will take refuge in the only one who can truly give it and pray for grace just for the next hour. Sometimes that's as far as I can get.
Thank the Lord that a big shot of grace is coming tonight, weather permitting. My beautiful mother is coming in town with her cape flowing behind her. She is coming to save my day-- at least until Wednesday. What should we do? Nap or shop...nap or shop...I can't decide. Maybe both.
Here is a pic from St. Louis while we were waiting to be discharged. Brian is probably trying to figure out a game-saving play on words with friends because I whipped his tail. This is the benefit of writing on the blog, honey. You can say whatever you want and no one knows the difference. :)
Thursday, April 21, 2011
Yes, we are currently in St. Louis for Livi's most recent workup of neurological information. Since 8am this morning she has been having an EEG and that will be done tomorrow morning. EEG stands for Electroencephalography. What essentially happens is they put these electrode things on her head with some super duper bad smelling glue stuff, wrap her head in gauze and tape to keep it on, and at the other end of the wires that attach to the electrodes there is some contraption that sends all of her brain waves to a computer room across the hall from our room. Make sense? Thought so...here is a picture. I call it EEG ponytail...
Tuesday, April 19, 2011
Saturday, April 16, 2011
This picture is from her and I "practicing" this morning. I was practicing putting her in it without pissing her off and she was practicing standing and walking. She is not yet walking independently in it, but we'll get there. She was enjoying looking out the porch doors--grandma says she is waiting for them to get here.
Livi had a good morning today and a good night tonight, but the afternoon was more napping and more seizures than a usual day. Thats ok. Apparently thats why we keep Tugger, our 4yr old boxer around--to entertain us while the kid sleeps. Brian thought it would be funny to play sounds on his phone to see what Tugger would do. There are no words...
Tuesday, April 12, 2011
- She is actually sleeping less. 1 nap a day max 4 hrs.
- She is not content just relaxing any more. She is making purposeful movements with her hands and fingers to try and manipulate toys or whatever is striking her interest.
- She is holding her head up ALL the time without letting it lag backwards. Up til 2 weeks ago she would let her head lag back all the way if she was tired.
The only feeling overriding that one is the pride I feel that she never, ever gives up. Monday in her vision therapy session she worked for 30 minutes to pick up and put down this light stick. It took sometimes up to 2 minutes for each part of the action, but she did it. I'll have to say I think I gave up before she did. My patience was tried and I kept waiting and waiting, fighting the urge to do it for her. But she proved me wrong. She can do it, she just needs some patience and support from me. Monday night we went on a family date to dinner and Livi sat in her chair at the table with us. I laid some toys out on the off chance she might want to play. Play she did. Pick up things, put them down, move slowly to touch it with the opposite hand, put it down, find it again, pick it back up. There was a lot of that. This picture is me holding the toy, but she wanted it back--you can tell.
Wednesday, April 6, 2011
Monday, April 4, 2011
And then there was Sunday...a busy day. It was officially her birthday, and we were at church for meetings and stuff from 8:30 to 3. For the last hour and half we convinced our friend to watch her for us during the meeting and Olivia did a terrible thing that resulted in this...
I think she is saying, "Who, me?" Yes you. This is partly my fault. I guess I thought we were past the time when I would have to have adequate extra clothing in the diaper bag. I guess not. This is what was left to wear after she pooped through both the shirt and the pants she was wearing.