31. July 2008 by admin.

Well Sarah will be heading back to the operating room tomorrow (Friday) at 1:00. There are two connections that were missed. One in the frontal lobe and one in the back. They estimate a 2-3 hour surgery this time, so translate that into real world hospital time and it should last about 5-6 hours.

There is a chance that this will cause a deficit in her speech, but we are counting on the Lord to make sure that does not happen. This needs to be done as soon as possible to make sure that the right hemisphere of her brain is permanently affected by the seizures or the disease. This is a set back, but hopefully not a long one. The rehab floor is going to try and hold her room so when she is ready she can come back to the same place and start where she left off.

 Kim and I just ask that everyone pray for Sarah tomorrow.

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30. July 2008 by admin.

Sarah’s MRI shows that there was a connection in her frontal lobe that was missed. That would explain the seizures. The surgeon wants to go back in as soon as he can to take care of it. We are hoping for this Friday. There is a lot of anxiety surrounding this surgery. We really hate for Sarah to start over in a sense in her recovery. They think that she should come out of the surgery in the same condition she is in now, but there is always the possibility that the connection that wasn’t cut is why she was able to speak so well after the hemispherectomy. Please pray that is not the case. She will get backed up on her target release date, but as I was reminded last evening by some friends in our community, the Lord will never give you more than you can handle.

Today is Sarah’s birthday. She is seven years old today.

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28. July 2008 by admin.

Sarah is having an MRI today which may show if there was a connection that was missed and may explain the seizures. I am not sure what to think, so I am just leaving all this in God’s hands and will just have to take it as it comes. I am tired of dwelling on the consequences of everything.

The other night I was sitting in Sarah’s bed with her and we were watching a movie and having a snack before bedtime. All of a sudden she pulls the blankets off of her and puts her left leg over the side of the bed. I asked her what she was doing. She looked at me and said, “I am getting up. I am tired of laying in this bed.” I had to remind her that her right leg isn’t working so well and she will have to keep working hard in order to get up on her own and walk around. In hind sight I should have got up and helped her stand and maybe she would have walked a little. She is starting to move her right leg more each day. I wish the right arm would start working again too.

We had a little birthday party for Sarah at the hospital. It stinks to have to celebrate your birthday this way, but she had a good time. The ladies from her benefit committee came to the party with a special gift for her. She got to see some of her friends which was really nice. She lasted a couple of hours before she was just too exhausted and needed to head back to her room. Thanks to everyone who helped with the party. It did her a lot of good.

awwwwwww…….sweeeeeeeeet chocolate cupcake

A little gift from the benefit committee. Its for “Therapy”

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25. July 2008 by admin.

Sarah had her EEG yesterday and it showed that the seizures she is having are coming from the left side of her brain. Right now you are asking how can that be when her left side has been disconnected? Well, there are a couple of explanations. One is that there is a connection that did not get cut. The other would be that the proximity of her left and right hemispheres could allow the left to affect the right side. If that is the case there is a very strong probability that the seizures will suddenly stop and not return, but you never know how long that will take. Dr. Franz told us about another patient that had this same issue and her seizures just suddenly stopped after about a month and never came back. We are hoping that is the case. We would hate for her to go through another surgery. She is going to get some special type of MRI to see if they can find any connections that were not severed. I will let everyone know when that is done.

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24. July 2008 by admin.

Sarah had a visit from her friend Victoria a couple of days ago. She had a good time with that. We are going to have a birthday party for her at the hospital this weekend. It stinks that she will have to celebrate her birthday this way, but we will do what we can to make it special.

 They scheduled an EEG for her tomorrow. They want to check and see if they can pinpoint where the seizures are coming from. The doctors are still not in agreement, but I have requested that they sit down and sort it out. I will know more about that in the next few days.

We had a conference today with all of her therapists and a few other people. They wanted to give us their input on goals they have for Sarah before they feel she can go home and do the rest of her therapy in an outpatient environment. They also wanted to know what our goals for her where. We are having a problem concentrating on her recovery when we have to deal with seizures. I feel like I am in a constant state of prayer begging for them to stop forever.

Sarah in recreational therapy

Sarah and Victoria

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22. July 2008 by admin.

 Sarah’s neurologist Dr. Franz was in to see her today. Kim discussed the PET scan with him and he told her that there is nothing abnormal on her right hemisphere. That contradicts what we were told by another neurologist. Dr. Franz is supposed to be in tomorrow and I am hoping to get this all  straightened out then. I have plenty of questions.

Sarah did have a good day today. She had fewer seizures today and worked really hard in therapy. She got a visit today from one of the hospital’s service dogs. They use them to help with the moral of kids in the hospital.

Sarah with Faith

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20. July 2008 by admin.

Sunday is the only day of rest on the rehab floor. Sarah and I took a walk (I walked, she rode) around the hospital and watched some movies in the morning. Nana and Grandpa came to visit for a while. She was happy to see them. Then my relief came in the afternoon. Mommy brought Logan and Ava down to see her. She fell asleep by the end of the visit.

She is eating very well and semms to be in a good mood most of the time. Just keep praying that the seizures go away. I am off to take Logan to Vacation Bible School. Its a huge event at our Church every year and is always a good time. I usually take pictures for the Church’s website, but I didn’t volunteer this year due to obvious reasons. I hope next year I can get back to doing that again. It really is a lot of fun. 

Sarah with Logan and Ava 

Can’t stay awake for Nana and Grandpa

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20. July 2008 by admin.

Sarah had plenty of visitors today. Aunt Cheryl, Uncle Joey, Aunt Susan, Cheyanna, Autumn, Nick, Noah, Seth, Grandma, and Grandma’s friend Ann all came to see her today. It lifted her spirits a bit. I think people are so used to Sarah talking your ears off that when they see her and she really don’t say much more than “hi” and not make a lot of eye contact they think that she doesn’t really want them there. The constant talking is the part of her personality that has not come back yet. I never thought that I would miss that, but I do.

Sarah with her cousins.

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19. July 2008 by admin.

Sarah started her rehab today. I wanted to get some pictures but little Miss Independent did not want me to go with her. In some ways her personality has come back, but I don’t feel it is all the way there. She had quite an ontourage when she moved down to the rehab floor. The nurses did not call for patient transport they all wanted to help move her down here. She was getting the celebrity treatment and she ate it up.

She seemed to have a lot of seizures last night, but still got some sleep. The doctors reviewed her PET scan and have given us differing opinions. One says that the right side is normal and the other says that there is an area that shows where these seizures are coming from. They both feel that it should go away in time, but that doesn’t relieve my anxiety about these seizures.

Here are a couple of pictures I took yesterday and today. I will try and post some of her in rehab.

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18. July 2008 by admin.

Sarah is doing well. She is still having some seizures. They have decided to give her a couple rounds of steroids to see if they can calm things down. She had a PET scan this afternoon to get a better idea of what is going on. We haven’t seen the results yet, but praying that it is something that will go away in time.

 She is being moved to the rehab floor in the morning. We met a couple of the doctors today that she will be working with. She will have occupational, rehabilitation, and speech therapy six days a week. I don’t have much else to report right now.

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