29. November 2008 by admin.

We had the kids pictures taken for our Christmas cards today. Let me add a plug for Lenos Photography. Doug was great with the kids. It went much smoother than I expected. Ava took a few minutes to get used to the surroundings, but she did fine. We were a little worried about all the flashes Sarah was going to be exposed to but she came through ok. We noticed when viewing some of the pictures that Sarah has lost a lot of the steroid weight in her face and neck. She is starting to look like her old self again.

 We haven’t seen any more seizures (praise God). She is spending the night at her Grandmother’s house tonight.

Click here to see the video of Sarah jumping.

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27. November 2008 by admin.

We haven’t seen anymore seizures. We are praising God for that. Sarah has been doing really good. Next week she starts going to school full days. She will still be off on therapy days, and she is getting some therapy at school too.

I went to pick her up the other day from school and she showed me a new trick she can do. She was jumping up and down. I will try to get it on video and post it soon.

We are off to Nana and Grandpa’s for Thanksgiving tomorrow. Hopefully it won’t be too much stimulation for Sarah.

 Thanks to everyone for there continued prayer and support for Sarah and the rest of us.

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22. November 2008 by admin.

We haven’t seen anymore seizures, so we are praising God for that. Dr. Franz’s nurse practitioner called and said that they think it is something that will pass, but we are not exactly sure what caused the seizures.

In other Sarah news, we are letting her sleep in the top bunk of her bunkbeds. She loves it. Now she wants to go in there during the day and watch movies. It still makes me nervous. I tell her about a hundred times before bed not to try and get down herself. She hasn’t tried yet, and hopefully she never will.

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20. November 2008 by admin.

Dr. Franz looked at Sarah’s PET scan last evening and then sent me an email telling me that everything looks good. That doesn’t totally explain the four seizures that she has had. I am going to try and meet with him soon to discuss in detail.

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19. November 2008 by admin.

Not a happy update. Sarah Had another seizure on Monday morning at school and one today in the waiting room before her PET scan. When we have the results of the scan I will post them. Please pray that this is just part of her healing and not anything permanent. That is four seizures in the last nine days. I wish I could put a positive spin on this, but I can’t find the words to do it.

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13. November 2008 by admin.

Sarah was seen by Dr. Franz today. We discussed everything that has happened this week and he seemed a little skeptical about the seizures. The EEG showed no seizure activity on her good side and the activity on the disconnected side is calming down which indicates that it is burning itself out. He still wants to have a PET scan done which we will be doing next week. That should give us some answers. He suspects that it is just part of the healing process and it may have been something from her brain stem like the cough. It would be a seizure but not the same kind that she had in the past. If it is just that, it would not be something that she would have to deal with the rest of her life. It is just part of the healing of her brain. He reminded us that she is just a couple of months out of a major brain surgery and there will be some ebb and flow to her recovery. Please keep praying.

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12. November 2008 by admin.

Sarah had her EEG this morning. I was a little apprehensive about her having it. Although it gives indications if there is seizure activity, they try to induce seizures to see. I thought since she only had the two that it was not a good idea to voluntarily irritate her brain. They skipped the strobing light part and she did fine. She did have a little coughing thing during the procedure. She has had that for the last couple of weeks. It is just like the cough she had after her surgery that was attributed to some kind of brain stem thing. It went away, but seems to have come back. Of course it could be that she has something in her airway making her cough a lot.

The nurse practitioner called us a few minutes ago and told us that Dr. Franz read the EEG results and sees no abnormal activity on her right side (the good side). That has given us some relief, but doesn’t go very far to explain why she had those two seizures. We have gone a little overboard because we are so scared. We have stopped letting her watch tv in a dark room and Kim has stopped doing her e-stim until we see Dr. Franz on Thursday. We felt that giving her shock treatment might be a bad idea right now no matter how low the voltage.

I find myself just sitting staring at her face watching it so closely that I start to see things that aren’t there. We were just starting to get complacent with Sarah. We just started to feel like we didn’t need to watch her all the time, but I guess we may never get to that point again.

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10. November 2008 by admin.

Kim came home this morning from dropping Sarah off at school very upset and told me that Sarah had a seizure while they were sitting in the school office waiting for her aid. She had another one about an hour later, but thank our living God that was all so far. Needless to say we are extremely scared and feel very helpless. We contacted her neurologist who ordered an EEG, PET scan, and blood drawls. He changed her medications for now and we will see him on Thursday. I don’t really know what to do or what to say.

Here are some pictures that I haven’t had time to post. Since everything came to a crashing halt this morning I guess I have time now. Please pray for Sarah. I don’t know why this is happening to her, but it is very very bad.

Sarah doing home therapy

Face painting for Halloween

Ava in her tinkerbell costume

All three kids

Ava in her pumpkin costume (it was too cold for tinkerbell)

Miley getting dressed

Miley being humiliated having to wear a costume

Profile of Miley in costume (its a Bee)

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6. November 2008 by admin.

Sorry I have been extremely busy with Logan’s soccer and not able to update the blog. I have a lot of material to post, but so little time. I will work getting a big update of Sarah posted this weekend. Something that I need now is prayer for a little boy that is at Cincinnati Children’s. His name is Tony Merk. He is three years old and just had a tumor removed from his brain. The cancer that they didn’t get they are hoping to take care of with chemotherapy. The doctor came in to tell them this morning that some results are back from pathology, but wouldn’t go into details. They will have a care conference tomorrow and they said “some decisions will need to be made”, which makes it sound bad. Please pray for strength and healing for Tony and his family. Here is his picture.

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