Thursday, August 20, 2009

Update @ 11:18pm (Wednesday)

Yep, you read that, it's after 11, getting closer to midnight as I write this. So far we still know nothing. Ella's CAT scan and EEG came back with the same abnormalities that they've always had on them. Her white blood count wasn't crazy when they got the CBC results, so it doesn't look like her body was fighting infection. I learned that febrile (fever induced) seizures are not about the temperature, but about the speed at which the body heats up. If your body goes from 98.6 to 102.1 in 30 mins it can cause a seizure, if it goes from 98.6 to 104.0 in the matter of 12 hours then it may not cause any seizures...just thought I'd give you some little bits of information I learned today. I can't sleep. Mainly because it never really gets quiet and it's really hard to sleep in the same room with Ella...how parents sleep with their children I will never understand. Every noise and motion makes me sit up. She tends to roll around a lot and get all tangled in her cords...or get her leg or arm stuck outside the crib. There isn't really a better alternative, except her bed. It's amazing, but her bed at home is the ONLY safe bed for her...I'll remind myself to post pictures and explain why at some point..not tonight. I've talked to God a lot today. I want to say that I've prayed a lot, but my mind wonders, so I've been doing better with just conversations...I realize that conversations and prayers can be the same...but I feel a difference. It started out with a silent prayer that they not really be seizures as I went to her room this morning, then out loud prayers to make the seizures stop, then thanksgiving that they got them under control, then and now...results, answers, but first, sleep. I'm anxious that they will have no real news for us tomorrow. That we will go home with the same info we had last night...try to prevent, both UTIs and the seizures. We have been on preventative meds for both...and yet here we are. I read of so many families that struggle with DAILY seizures...I just can't imagine that being our "normal".....although, I'm sure most of you wouldn't want to consider my life your "normal" either. Today I feel numb. I've cried more from watching my husband's heart break over his daughters pain. I just can't process that we are here again...waiting for answers...hooked up to machines...and not going about our fun, but over-scheduled, lives. Please pray that we will have wisdom as we ask questions, receive answers, and make decisions about Ella's future. I'm not sure I can write how much your prayers and notes have meant to me. It's amazing that a website like this can incite prayers around the world. I appreciate your prayers and pray that you will receive God's blessings as you intercede for our family."Consider it all joy my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance and let endurance have it's perfect result, that you may be perfect and complete, lacking in nothing." James1:2-4

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