OK, so it's been a while since I've updated everyone, and I'm sorry about that. But Killian and Kelly got here, and things have just been crazy busy around here. Karlie's little face just lit up when Killian and Kelly walked in the door. She said "My bubby!!!!!" and he ran up and gave her a great big hug!!!!
So, anyhow, we got moved up to the EMU, and into the care of Dr Wheless. This is the guy that people have told us that patients come from all over the United states to see Dr Wheless. In fact our EEG tech told us today that we were very lucky to get him. And was a little baffled at how we arrived under him. Especially starting out with Dr Lynn (apparently they are "competing" dr's, or at least under 2 different groups) Anyway, I think the last update Karlie had just had a Spect test maybe, and then we were going to bet a base line test the next day. But she had too many seizures that night. That was even after 25 mg of Valium......now that is a serious dose of Valium. You can not begin to imagine what a drunk 3 and a half year old looks like, but at the time it was very funny.....she licked her frog's eye (she thought it was a lolly pop) and she giggled and kept playing with her numb lips. It was kinda funny. Anyway, Dr Wehless told us that she was not a good candidate for surgery because she was having seizures over most of the right side of her brain. But he felt he could get a pretty good hold of these stupid seizures with medication (especially now that we know what kind she is having.) He said that he has several options, we just have to find the right combination. So we are here at least another night. We are hoping to break outa this place tomorrow. I just want to get home and enjoy my own bed, my cool house (it is too warm in this room) and a nice ride on the motorcycle. Those are the just a few of the things I miss.
Anyway, I am not sure what will happen over the next few weeks, but Karlie can't go to daycare because of the steroids she is on. They lower her immune system and they don't want her exposed to anything. We were supposed to start summerhill on Monday. But, we also have to trek to Kansas City. My grandpa passed away this afternoon at about noon. And his funeral is Wednesday. I tell you, when it rains, it pours right? So we have a 9 hour trip back to Enid tomorrow (hopefully) and then we will be home Tuesday to get things together then it's back on the road again on Wednesday for another 6 hour trip to Kansas City. I tell you, I feel like a traveler this week.....feel like I've dang near been all over..... Anyway, so please pray for all our safety traveling so much over the next couple of days. (I'm sure everyone in the car would ask for it, especially if I'm driving. you guys all know how I am.....)
So that is the scoop, we are heading home tomorrow and then after some time, we will be doing another EEG (not sure if we will have to travel to Memphis or not) to see if things are helping, but let me tell you, it is glad to have my spunky, happy, baby girl back. It is awesome
9 days
11 years ago
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