Monday, November 28, 2005

2nd Month



Cameran had her 1st MRI on Sunday, October 2, 2005. She did wonderful. They requested her not to eat 5-6 hours prior the scan which wasn't that difficult because she was still allowed juice up to 2 hours before. They used Propofol for the mild sedation it doesn't knock her all the way out she is still awake but they needed her to lay very still for the scan. We arrived there at 10:30am and was pushed back 45 minutes because her juice wasn't what they considered clear. The reason for this is so they don't start coughing and it turn into pneumonia. After the scan which only lasted 45 minutes they brought her back to the recovery room where she came right out of the med quickly and we were able to leave an hour later. She was such a Big Girl, having slept through the whole process sedated and not... :)

The scan came back normal which was wonderful news but is still leaving us in the question zone???? She still has no known cause to her having this which is so frustrating. But we know that no known cause is a better outcome for her because she was on track before being diagnosed.

She is still having 10-50 head drops a day but seems to be in better moods compared to last month. It's so strange to us to watch her have these great days with hardly any seizures only to turn around the next day to have a dozens of them. Cameran's neurologist called in a new med Keppra and she has had great response from it although it knocks her out. She has been having nights where she doesn't sleep well and is up for a couple of hours at a time and others night doing just fine. She is all over the page with everything. She got down to as little as 9 head drops for a few days only for them to creep back up on us. On the plus side of this med it is slowly bringing back her playful side and she even let out a slight laugh at her brother that we hadn't heard since the day she was dx at the Hospital. I was in tears since I hadn't heard it in so long...

On 10-11-05 Cameran started a new move. When her head drops down her arms and hands would shake. It was so scary. She did this 38 times in a row w/in 5 minutes time and it was so hard on her she got so upset with everyone she did. Her head being harder and harder to pick up after each one compared to her normal ones where she just lifts it back up. We hope this isn't a new seizures type coming on. We talked to the Dr. about it and he says its hard to tell w/out seeing it but it could be another form. She has only done this 3 different times.

Her development this month is getting better. She is squatting down to pick things up and trying to climb. She is also starting to play with toys again but it doesn't hold her attention very long. Since starting the Keppra she has started this constant moan that we hear non stop it sounds as though she is in some sort of pain but she is not. We guess its the only noise she knows at the moment. Her appetite has gone way down some days being better than others. But she is weighing in at 19 pounds 3 ounces and looks every bit of it she is a little chunk full of energy. She won't play much but boy can she move she is a fast crawler. She is determined to not let this get the best of her! GO BABY GIRL ......

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