Some good news…maybe

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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Not Good News

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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Need Prayer Now!

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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More Pumpkins

20. October 2008 by admin.

We have been really busy the last couple of weeks getting in all of our halloween activities. We went to another pumpkin and hayride event last weekend. We went with Sarah’s friend Marissa and her family. Logan’s soccer is keeping us hopping. I could start a blog just on all of his soccer activities. Kim and I went on a Treasure Hunt last night with some friends. It was a great time and it raised money for the Epilepsy Foundation of Western Ohio. It was a nice adult night out that we really needed.

I noticed today when we were leaving a soccer game that Sarah is not overcompensating her walk as much. The best way I can explain it is that she wasn’t lifting her knee unordinarily high. It could have been because she was tired, but her walk was looking more normal. She is doing the e-stim or her electroshock therapy (I love the reaction when I tell people that we are giving her electroshock therapy) at home now. It doesn’t hurt her, but she gets impatient having to sit in one spot while she is doing it.

Here is a picture of Sarah on the e-stim and some pictures from last weekend.

Sarah getting electroshock therapy

Sarah on the wooden train

Ava, Sarah, and Marissa on the wooden ship

Ava going down the slide on the wooden ship

Marissa, Sarah, and Ava on a really big tire

Photo op

Sarah is going to take the controls

Ryan, Logan, Ava, Marissa, and Sarah on what I guess is the Pumpkin King

Sorry, Michelle I just couldn’t resist posting this

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Small Update

9. October 2008 by admin.

I know I haven’t posted in a while so I just wanted to give a small update. Sarah is doing good, working hard at therapy and school. We extended her school hours this past week so she can get in more subjects like art and music.

We are working towards getting our insurance to cover more therapy. Right now she is going two days a week because we only get so many therapy sessions a year and wanted to spread them out. We would like her to be going three days a week at least for the first couple of years.

I hope to have some new pictures and maybe some videos to post in the next few days.

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Pumpkins

29. September 2008 by admin.

The girls left Logan and I this past weekend to go to a pumpkin festival. We had to go to a soccer tournament. Sarah got a workout walking around the festival all day. She had a great time with her friend Marissa. The pictures are below.

 The therapists gave her a splint to wear on her hand at night. It helps keep her fingers straight. Her hand tends to ball up. We try and stay on her about stretching her hand out several times a day. We would like to see some function come back to that hand down the road. The doctors don’t give us much hope, but then they never have. Sarah gets annoyed, but every time I am next to her I try and stretch her fingers. You can feel how tight the tendons and muscles are in her hand.

She goes down to Children’s for a neuropsych test in the morning. This will help assess what she needs from school. It is supposed to take a couple of hours to complete the test. She had one before her first surgery and did very well. She was reading at a high school level back then. It will be interesting to see what level she reads now.  

Sarah and Marissa

More Sarah and Marissa

Sarah and Ava

Riding in Barrels?

Not sure what this reaction is from

 

Sarah, Marissa, and Michelle (Marissa’s Mom)

Ava being silly while eating ice cream

More barrel fun with Ava and Mommy

Sarah feeding the animals

Ava feeding the animals, but with less enthusiasm

Marissa, Sarah, and Ava

Striking a pose in the parking lot

Nothing is safe with this group behind the wheel

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Time for Cheering

21. September 2008 by admin.

Sorry for not posting anything in a while, but for the people outside our area we had a nasty wind storm roll through and took down our power for a few days. Some people are still without power. We spent a couple days helping neighbors clean up trees and debris.  

 Sarah has been busy cheering. She got to join her 2nd grade team and cheer at one of the high school games and cheered today for the pee wee football. I do have video which I am going to work on getting up. She is doing so well with everything. I found it a little hard to watch her struggle to use her right arm to cheer. I wish she could get more function back in that arm soon. She tries so hard to use it, but it just isn’t responding the way she wants. There is some movement so that gives us hope.

 Here are some of the pictures as promised.

Sarah got her own parking space at the stadium

Sarah with Jordan

Looking to Shelby for direction

 

Starting to get into it

getting a little tired

cheering for peewee

more peewee cheering

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Miley’s New Pool

14. September 2008 by admin.

All the Madison pee wee cheerleaders got to cheer with the high school cheerleaders at the varsity football game last night. Sarah was able to go down and cheer with our neighbors Jordan and Shelby. They helped her out with the cheers and she had a great time. Of course being the bad parents that we are, we remembered everything but the camera again (I am going to start wearing it around my neck). Some friends took pictures for us so we would have some. I am waiting for those and will post them when I get them. I should have the ones from the coin toss last week very soon too.

We all went to my nephews soccer game today. I was amazed how good Sarah is getting around walking. She is almost up to a normal pace. Her foot still turns a little bit, but she is working hard. The pictures below she has her cane, but we have been leaving it in the car when we go places. Sarah’s therapist has started some kind of shock therapy. It sounds a little harsh, but I don’t think it is that bad. Kim told me that it was just sending signal to the brain to help train it to do things properly. I know, it didn’t make sense to me either. They feel that it will be more beneficial than aqua therapy for now, so her time in the pool will be suspended for a while.

We bought Miley a little pool today. She seems to like water since she always tries to swim in her water bowl. At first she just thought it was just a huge water bowl and was drinking out of it, but she soon warmed up to it (or cooled down with it). Oh….and Ava like it too. 

Trying to talk Miley in to getting in the pool

Ava shows her how to do it

Ava says “forget Miley, this is fun”

Miley starts to get interested

Can’t think of anything clever for this picture

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Aqua Therapy

11. September 2008 by admin.

Sarah started aqua therapy today. She did OK, but she will have to learn that it is work and not play time. We had her in our pool last week and she does very well in the water. Sarah went down the Children’s to see her attending rehab doctor and he was very impressed with her progress. I guess since we see her everyday we are too close to see how far she has come since her surgery.

We got a break from everything Tuesday evening so Sarah went outside with her brother and sister to play. Miley was there too.  

 I know I don’t say this enougn, so thank you to everyone for their ongoing support of Sarah and our family. I can’t imagine where we would be without it. God Bless you all!

Aqua therapy

More aqua therapy

Sarah chasing Miley

Got her!

I guess its close to nap time.

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Sleep Over

8. September 2008 by admin.

 Sarah was able to do the coin toss for the Madison Varsity Football game Friday night. She did much better that I thought she would. Doug Lenos of Lenos Photography was gracious enough to take pictures of the whole thing and I am hoping to get them this week to post. She flipped the coin pretty high. When we saw the coin go so high in the air I thought the referee did it for her (We waited on the sideline). I want to mention that Madison won the coin toss.

Sarah’s friend Marissa came over to spend the night on Saturday. We are still a little leery about her staying over at a friend’s house, but we will work on it. Sarah has had no issues going to school or in therapy. She is now getting up and wondering around the house on her own. I get a little worried, but am learning to let her go exploring. Next week is going to be a busy week. She has appointments with Neurosurgery and has to go down to Children’s Hospital for some type of neuro speech evaluation. So I get to take a day off and drive down to my work.  

 Sarah with the Madison Varsity Cheerleaders
(Thank you Doug Lenos)

Sarah, Marissa, and Ava
(we can’t keep clothes on Ava. I guess she is one of those “free spirits”, which scares me)

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