Sarah’s Story (well, backstory)

On the morning February 10, 2008 Sarah was baptized at church. We thought it was a good day until I put her to bed that night. I went in to tuck her in and her face was twitching fiercely. I shook her and she seemed to come out of it. I went and told my wife Kim about it. We really didn’t know what to think. The next day Sarah was walking through our kitchen when she stopped and just stood there with a blank look on her face. She was drooling and her mouth was twitching. We decided to take her to the doctor that day. Her pediatrician said that it was probably seizures. We were confused because up to that point she was extremely healthy. We were told to schedule and MRI and CAT scan at Cincinnati Children’s Hospital. We stopped at my parents house on the way home to pick up our other two children (Logan and Ava). While we were there she had four more in the time span of about 45 minutes. We called the pediatrician back and they told us to take her to the hospital and have her admitted. We spent six hours in the Emergency Department at Cincinnati Children’s Hospital. While we were there they did a CAT scan, which came back normal. She was finally admitted and the next morning they did an MRI. We were shown the MRI and they showed us that there was some abnormality in her brain. They were pretty sure it was cortical dysplasia, but they did not rule out some kind of encephalitis or other viral or bacterial process. At that time we were worried and was hoping that it was just something viral that would go away (now i wish it was the cortical dysplasia). They put her on an anti-seizure medicine and sent us home the next day. Her seizures started to become more frequent and after switching her seizure medications they decided to re-admit her. At this time her mouth was in a status seizure and she was having a hard time talking. She was in the hospital for three weeks. They ran more MRI’s, PET scans, Spinal Tap, and I can’t remember how many EEGs. They stopped her focal seizures with high doses of steroids, but the continuous seizure just kept going. The doctors were not all in agreement yet, but one of the doctor’s told us that he suspected that she had a very nasty disease called Rasmussen’s Encephalitis. I read some publications on the disease and it was very scary. The only treatment that was even close to being a cure is to disconnect one hemisphere of the brain. Imaging a doctor telling you that is what they want to do to your child and you can imagine what we were feeling at that moment. We lived in denial of this disease for a while. We started searching the internet for information, but there was not much out there.

 Since not all of the doctors were convinced, the surgeon decided that a good course of action would be to open her skull and first put “The Grid” on her brain. It is a bunch of electrodes that help them map where the seizures are coming from. Second they would remove the small piece of her brain that was causing the continuous seizure. They did all that and she had very little ill effects from the surgery. She recovered great and we went home a few days later.

 A couple of weeks later we went to the neurologist for a follow up and while we were there she had a seizure. She continued to have more and more of them until they admitted her back into the hospital for a few days. they adjusted her medications again and given a course of IVIG (antibodies). They told us that they wanted to buy her some time while they tested for a couple of more things.

At present she is at home waiting for those test results and will receive another round of IVIG on Monday. She will have the hemispherectomy within the next couple of months. We are trying to prepare for it, but how can you? The help and support we have been getting from our family, friends, and community has been nothing short of amazing. The Lord has provided for us the whole time. We have been truly humbled by His grace.

 I will try and post more pictures of Sarah soon. I am working on a website for our family. Stay tuned…

This entry was posted on 16. May 2008 at 20:19 and is filed under All About Sarah. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response or trackback from your own site.

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