16. January 2009 by admin.

Well they are keeping Sarah another night. She did have a little spell this evening. They finally got one on video. I have to call it a little spell because we are not sure what is going on. The EEG showed that whatever it was that Sarah had it wasn’t coming from either side of her brain. There was no seizure activity picked up by the EEG. I have a feeling that they are going to tell us that it is coming from her brain stem. I am still confused, but feel a little bit more relief. Sarah will be discharged tomorrow now that they have captured one of her episodes. I will post more tomorrow.

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15. January 2009 by admin.

Sarah’s admitting went smoothly. She is hooked up to the EEG. She is in good spirits painting and watching tv. Before I left work I went over to see Sarah and Dr. Franz came in to tell us the results of the MRI. He said that the right side (the good side) looks very good and sees nothing that would suggest seizure activity. The other side is not completely burned out yet. They added tractography (not sure if I spelled that correctly), which would show if there are any connections that were missed. There were no connections that they could see. Dr. Franz’s thinks that it could be a couple things. One could be brain stem phenomenon which would be the same thing that caused the cough she had post surgery. It also could be the disconnected side releasing chemicals as it burns out that can cause seizure activity. They are hoping to get one of her episodes on the video EEG to see where all this is coming from. The doctor also told us that he glanced at her EEG and it looks good. As I told someone earlier, the knot in my stomach has gone from a softball to a golfball. Everything appears to be good news, but hasn’t really answered all the questions.

While Sarah was having a snack tonight she lost and swallowed one of her front teeth. I told her no tooth, no money. Mommy is a little softer than I am, so I am sure she will get paid anyway.

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14. January 2009 by admin.

Sarah was seen by Dr. Franz today. He is unsure what exactly is causing her seizures, so there will be some tests. She had some blood drawn to check her medication levels. She had an MRI today and was admitted for a 24 hour EEG. She has had one seizure today (right after her MRI). I am not sure if it is the unknown or the possibilities that scare me more. I hated seeing her back in a hospital bed. I really believed she would never have to be admitted again.

 I will keep the blog updated when I know more. I just ask for prayers.

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13. January 2009 by admin.

Sarah vomited this morning while she was eating breakfast. She had two seizures today. We are feeling a bit helpless and worried. Kids that have epilepsy are more prone to seizures when they are sick, but Sarah shouldn’t be in that category. Her right hemisphere is good (according to her last PET scan). She has been complaining of headaches and vomited a few times over last 4 days. As worried as I am about her disease spreading I am also worried it could be something else. The symptoms are not reassuring.

Headaches + Vomiting + Seizures = Not good

 She goes to the doctor on Thursday. I will post something when I know more. Please pray for her.

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10. January 2009 by admin.

Sarah’s recovery is having plenty of ups and downs. I guess right now we are on a down. Sarah had a small seizure Thursday night. She vomited during therapy yesterday morning so her therapy ended a little early, and had two more seizures last night. We talked to a neurologist that works with Dr. Franz. He called Dr. Franz and told us that Dr. Franz will see Sarah this coming week. He may want to repeat the PET scan. He did try and reassure us that he is positive that Sarah’s disease has not spread and she will be fine. I say he tried to reassure us because when we see her have a seizure there is very little that reassures you of anything.

She seems fine this morning. She is playing and in a good mood. Here is a picture of her playing with her sister this morning.

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4. January 2009 by admin.

The Cincinnati Enquirer came to our house, shot some video, and did a story about Sarah. They interviewed her neurologist Dr. Franz and her surgeon Dr. Mangano. If you would like to see it click here . I am still trying to get time to edit all of our Christmas video and post something. She is doing fine and has been doing some great work in therapy lately.

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