27. May 2008 by admin.

The Madison Township community and I am sure many beyond our community are having a benefit for Sarah on July 12th. It is at Kingdom Sports Center in Franklin, OH. Kingdom Sports Center has donated the time for the benefit and I have been told that there will be a cornhole tournament, 3v3 basketball tournament, those giant inflatable things for the kids, t-shirts, and some live bands to provide music. When I have a complete list of sponsors, times, and events I will post them.

While I was typing this Kim received a phone call from the Make-A-Wish people and they can send us to Disney World on Friday 30th (this week) if we can swing it. We would be there until June 4th. We are going to scramble now and see if we can do it.

 I am trying to find the time to write thank you letters to family and friends that have given us so much support. It weighs on me everyday that I have not done that yet.

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24. May 2008 by admin.

Sarah was able to go on her class field trip to the Cincinnati Zoo. She did have a lot of seizures. We are hoping that the IVIG starts to slow them down, but it can take 5 or so days before it starts to work.  The Make-A-Wish counselor came to the house this week. She went through all the paperwork with us and mailed it the same day. we may hear something as early as tuesday. they are trying to expedite her wish. she needs to have her surgery, but the doctors are trying to buy her enough time to get her wish in. We still are waiting for biopsy results from Montreal. Dr. Franz told us that it should be any day now. I believe after those results are in she will be scheduled for surgery.  

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21. May 2008 by admin.

Sarah went in yesterday to have a port put in so she won’t have to have anymore needle sticks for blood drawls or medications. she made it through the procedure with no issues. She was then admitted to the neuro floor to get another round of IVIG. She had a bad weekend coming into the procedure.

Logan had a soccer tournament up in Troy, so we decided it would be ok to just get a hotel room for the weekend so we didn’t have to get up so early for games. In the middle of Logan’s second game I get a phone call from Kim telling me that Sarah had fallen during a seizure and hit her head on her surgery site and broke it open. Since she works at the Atrium she called the charge nurse and they stapled her up. So our plan of the kids having a fun weekend of swimming and getting in the hot tub at the hotel just didn’t work out. Logan’s team did well going 2-1, but the team that beat them went 3-0 so they didn’t win their bracket and we didn’t have to stick around for the late Sunday game.

Sarah’s seizures clustered on our way to the hospital to have her port put in. She had 10 seizures in an hour. She calmed down once we gave her some medication. She had another EEG today before she was discharged. We were told that everything was still on the left side, which in her case is good news. She got to see her favorite nurse Barb and her favorite massage therapist Susan. They both have been great support for her.

Kim received a call from the Make-A-Wish people and they are trying to rush through a wish for Sarah. We may be headed off on a little vacation in the next couple of weeks. 

We were also informed that a bunch of families/friends from our community are planning a basketball tournament / carnival benefit for Sarah at Kingdom Sports Center in Franklin on July 12th. When I get a full schedule of activities I will post them.

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16. May 2008 by admin.

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…

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16. May 2008 by admin.

Working on getting this blog going

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