We took Katie for her appointment with the Dr. on Wednesday. The V-EEG showed some spiking in the readings which showed slight potential for seizures. The doctor was reluctant to begin slowly taking Katie off the anti-seizure medication. So, Katie will continue to be on the meds for another year. We will schedule another V-EEG for sometime in the early part of summer of next year. It was kind of a disappointment but we trust the doctor that it is necessary for Katie to stay on the medication. Please continue to pray for her.
Saturday, July 5, 2008
Friday, June 27, 2008
Home From VEEG
All three of us were awake by around 7:30 this morning. I stayed up most of the night, with a few moments of drifting off here and there. I think I stole about an hour all together the whole night. The EEG technicians told us they should have the recordings analyzed by next Wednesday. That's when Katie's appointment with the doctor is.
Katie did very well considering all she went through with the prep and being confined to her hospital bed the whole time. Of course it took a while to wash out all the sticky stuff from the electrical leads. We're tired. During the testing Katie attempted to play on the laptop, but it kept on interfering with the EEG. I think for the most part she was quite board the whole time.
Katie did very well considering all she went through with the prep and being confined to her hospital bed the whole time. Of course it took a while to wash out all the sticky stuff from the electrical leads. We're tired. During the testing Katie attempted to play on the laptop, but it kept on interfering with the EEG. I think for the most part she was quite board the whole time.
2AM Update
Well it's about 2:15 a.m. and all is well. I've been doing pretty good at keeping my eyes open. For a while now I've been working on the laptop. I think by now it's making me a little tired. I found a couple new Bible study sights though. I've bookmarked them for future reference.
There have been a couple of nurses come in the room since about 12 midnight. The first one took vitals at around 12, then another one has come in a couple times to just check in. They are very nice to try to make the person awake as comfortable as possible. I don't know about you, but there is nothing comfortable about sleep deprivation. I'm doing ok though.
There have been a couple of nurses come in the room since about 12 midnight. The first one took vitals at around 12, then another one has come in a couple times to just check in. They are very nice to try to make the person awake as comfortable as possible. I don't know about you, but there is nothing comfortable about sleep deprivation. I'm doing ok though.
Thursday, June 26, 2008
We're in the VMR
VMR = Video Monitoring Room
We've been in the room since 6:30 p.m. We arrived at Children's Hospital around 4:00 p.m. Michael and Grandma Miller stopped by and visited for a while.
Katie's head is all wrapped up and her hair-do is a little different than it was the last time. It's definitely different than it was when we arrived earlier today.
It seems quite different here this time, since we're not in the "uncertain mode". We know what to expect this time and it is much more at ease knowing why we're here, seeing we are post tumor. It was funny how the nurse has come in to check Katie's vitals. All that seems trivial this time. Like I told Katie, we're just here for a little ride. I forgot the camera card reader to upload pictures on the internet, so I'll upload them when we get home tomorrow; time permitting.
Katie is in good spirits; she's just making the best of the head wrap and wires. Sandra and I will be playing tag with the sleep thing. One of us has to be awake. We're really not expecting any abnormal activity on the monitor, but we have to monitor it just the same. I'll blog more tomorrow.
We've been in the room since 6:30 p.m. We arrived at Children's Hospital around 4:00 p.m. Michael and Grandma Miller stopped by and visited for a while.
Katie's head is all wrapped up and her hair-do is a little different than it was the last time. It's definitely different than it was when we arrived earlier today.
It seems quite different here this time, since we're not in the "uncertain mode". We know what to expect this time and it is much more at ease knowing why we're here, seeing we are post tumor. It was funny how the nurse has come in to check Katie's vitals. All that seems trivial this time. Like I told Katie, we're just here for a little ride. I forgot the camera card reader to upload pictures on the internet, so I'll upload them when we get home tomorrow; time permitting.
Katie is in good spirits; she's just making the best of the head wrap and wires. Sandra and I will be playing tag with the sleep thing. One of us has to be awake. We're really not expecting any abnormal activity on the monitor, but we have to monitor it just the same. I'll blog more tomorrow.
Video EEG Today
Today's the day we go up to Children's Hospital and do the video EEG. Well, Katie has it done. I told her this morning that at least she gets to sleep all night. Mom and dad have to take turns staying awake monitoring the monitor. That's ok though, we'll gladly do it.
We had a little skip of the heart beat when someone from the hospital called this week to remind us to take Katie off her medication for the test. We said, "No way!!!" The doctor told us she could stay on her meds during the testing. The lady called us back the next day to let us know that she had her information wrong. NO DUH! We knew that.
All in all, Katie is fine with all of this. We're packing up the toys to take with us so we will have stuff to do. I'll have the laptop so we can update the blog. However, there won't be much to update, we'll just have fun with it. Michael will stay at home. Grandma Miller will be staying the night at the house.
Hopefully after this test, we'll hear more about taking Katie off the meds. We'll just have to wait and see what the doctor says.
We had a little skip of the heart beat when someone from the hospital called this week to remind us to take Katie off her medication for the test. We said, "No way!!!" The doctor told us she could stay on her meds during the testing. The lady called us back the next day to let us know that she had her information wrong. NO DUH! We knew that.
All in all, Katie is fine with all of this. We're packing up the toys to take with us so we will have stuff to do. I'll have the laptop so we can update the blog. However, there won't be much to update, we'll just have fun with it. Michael will stay at home. Grandma Miller will be staying the night at the house.
Hopefully after this test, we'll hear more about taking Katie off the meds. We'll just have to wait and see what the doctor says.
Friday, May 16, 2008
Softball & Upcoming Video EEG
Well, it's been a while since I've posted on Katie's blog. Katie is doing well and we are anticipating the day when she can be done with her medication. She is scheduled for an overnight Video EEG starting on Thursday, June 26th. The way they usually set these up is to have us start around 4 pm on Thursday and be done by some time late Friday afternoon. She will be on her medication during the VEEG (unlike last time), so it should go much smoother than before.
Katie is playing on a girls softball team this year. So far her team has won most of their games. Katie plays third base most of the time. She's got a throwing arm like her brother. She's been practicing at pitching and is pretty good, but she's a little apprehensive about the center of attention that position gets. She's also hitting really well. You can see pictures of her over at "Bob & Sandra's Place".
Katie is playing on a girls softball team this year. So far her team has won most of their games. Katie plays third base most of the time. She's got a throwing arm like her brother. She's been practicing at pitching and is pretty good, but she's a little apprehensive about the center of attention that position gets. She's also hitting really well. You can see pictures of her over at "Bob & Sandra's Place".
Wednesday, March 19, 2008
One Year Since Surgery
Not much to report, however...
Today marks the one year anniversary of the first stage of Katie's surgery. It hardly seems possible that a year has gone by. The memories are so clear; the ups and the downs, but the blessed results are what stand out in our minds! We are unceasingly thankful to the Lord for how He has blessed Katie, and our whole family is ever mindful of God's divine care over us.
We are so blessed!!!
Justin Conn's surgery went well. He only had to have one surgery. We are grateful, along with the Conns, for the Lord's blessings in this.
God is so GOOD!
Today marks the one year anniversary of the first stage of Katie's surgery. It hardly seems possible that a year has gone by. The memories are so clear; the ups and the downs, but the blessed results are what stand out in our minds! We are unceasingly thankful to the Lord for how He has blessed Katie, and our whole family is ever mindful of God's divine care over us.
We are so blessed!!!
Justin Conn's surgery went well. He only had to have one surgery. We are grateful, along with the Conns, for the Lord's blessings in this.
God is so GOOD!
Thursday, March 13, 2008
Results of Katie's One Year Checkup
The visit with the doctor went well. However, we received some new and different information than what we thought we were going to hear. Rather than beginning to gradually take Katie off the medication, he said to keep her on the current dose until after another Video EEG. Yes, that is the 24 hour EEG where Katie and mom and dad get to spend the night and monitor brain waves. YIPEEE! The doctor said that the regular EEG Katie had back in November doesn't give them enough information to make a medication decision. The VEEG will give them the proper information concerning possible seizure activity.
Another thing he said, and we tried not to make a big deal out of this in front of Katie, is there is a possibility that, even after all the surgery, medication and so forth, she could still have seizures after she's taken off her meds. That was a little unnerving. We were under the impression, based on the doctors' telling us, that since the tumor is gone, and that the tumor was causing the seizures, that the seizures would stop. Well, according to their research "sometimes" the seizures don't "completely" go away. I'm wondering if they have to say that because they just can't be 100% sure that Katie will be seizure free. Anyway, we just sped past that with Katie. Our prayer is that she will be seizure free.
Back to the VEEG--> If the results of that test are OK, then the doctor will consider gradually taking her off the meds.
We were able to visit with the Conns while we were up at the hospital. Justin had his surgery. It looks as though they only had to do the single surgery and while we were talking with them, the nurse came and got them. They were able to see Justin for a few moments between the surgery and ICU. Keep them in your prayers and we'll update his recovery as we get news.
Another thing he said, and we tried not to make a big deal out of this in front of Katie, is there is a possibility that, even after all the surgery, medication and so forth, she could still have seizures after she's taken off her meds. That was a little unnerving. We were under the impression, based on the doctors' telling us, that since the tumor is gone, and that the tumor was causing the seizures, that the seizures would stop. Well, according to their research "sometimes" the seizures don't "completely" go away. I'm wondering if they have to say that because they just can't be 100% sure that Katie will be seizure free. Anyway, we just sped past that with Katie. Our prayer is that she will be seizure free.
Back to the VEEG--> If the results of that test are OK, then the doctor will consider gradually taking her off the meds.
We were able to visit with the Conns while we were up at the hospital. Justin had his surgery. It looks as though they only had to do the single surgery and while we were talking with them, the nurse came and got them. They were able to see Justin for a few moments between the surgery and ICU. Keep them in your prayers and we'll update his recovery as we get news.
Monday, March 10, 2008
1 Year Checkup
This Wednesday we take Katie to the doctor for her one year from surgery checkup. It's hard to believe that at this time a year ago we were preparing for the drama of brain surgery. It seems trivial to me to say that, I wasn't the one having the surgery. With Katie not remembering so much about it, we'll never fully know what she went through in her mind. However, that's the blessing of it, who would want to remember all those details. Still, Sandra and I remember all that we encountered as we were there with Katie, and of course, as parents, if need be, we would do it all again for her. Meanwhile, Katie just goes on, not totally like it never happened, but knowing it's in the past and that the Lord blessed her tremendously.
Our hope is that this will be the point when we will be able to start weening Katie off the medication. She has done so well at remembering to take it, it may seem strange to her as her
regiment changes over the next couple of months. We really don't know how the changes will work yet. Nevertheless, she's ready to be done with the meds, so I'm sure she will adjust fine.
By the way, Wednesday is the day that Justin Conn will be having his surgery. He's the son of Michael's Bible teacher at school. We're hoping to stop by and visit with the Conns while we're there.
I'll give the results of Katie's checkup in the next post.
Our hope is that this will be the point when we will be able to start weening Katie off the medication. She has done so well at remembering to take it, it may seem strange to her as her
regiment changes over the next couple of months. We really don't know how the changes will work yet. Nevertheless, she's ready to be done with the meds, so I'm sure she will adjust fine.
By the way, Wednesday is the day that Justin Conn will be having his surgery. He's the son of Michael's Bible teacher at school. We're hoping to stop by and visit with the Conns while we're there.
I'll give the results of Katie's checkup in the next post.
Wednesday, February 20, 2008
Why Keep Up This Blog?
Some time ago I was somewhat contemplating discontinuing Katie's blog. We are coming up on the one year anniversary of Katie's surgery. One day last week I received an e-mail from someone we have never met before. Please take the time to read this e-mail. It answers the question: Why Keep Up This Blog?
THAT'S WHY!
As long as this blog can be a blessing and an encouragement to folks like Dawn and her daughter Hayley, then I'll keep it up and running.
All because of God's Amazing Grace!!
***************************
My name is Dawn and I am the mother of an 11-year old girl named Hayley. I came across Katie's Health Journal while doing some research on the internet.
My name is Dawn and I am the mother of an 11-year old girl named Hayley. I came across Katie's Health Journal while doing some research on the internet.
Hayley has been on medication for complex partial seizures since she was 7 years old and was for the most part seizure-free until last year. In June, her dad and I realized she was having seizures when she slept--6 to 8 every night. She even has seizures when she lies down for a nap. Eventually, she started having them while she was awake, also.
Until this year, when she started in 6th grade, her epilepsy has not interfered with her schooling at all and she has been an A/B student. Unfortunately, a combination of medication side effects and the uncontrolled seizures is taking its toll on her schoolwork.
We have gone through trials of various anti-seizure meds at various doses, and nothing is controlling her seizures, although right now her daytime seizures are mostly controlled. Her local pediatric neurologist referred us to Dr. Chugani because he was out of ideas. According to Dr. Chugani, since she's failed so many different meds the odds are she will never be controlled on medications alone.
Right now, we are in the process of evaluating to see if she is a candidate for surgery at the Children's Hospital to remove the seizure focus, and hopefully one day be seizure free and medication free. She has had a video EEG and a PET scan, and there is a strong focus in the right temporal lobe. Her father and I, as well as Hayley, are very frightened about this possibility.
I realize the reason behind Katie's surgery was a tumor, so her situation is a little different than ours. However, it was very comforting to see how well she was doing after surgery and the immediate recovery period. If Hayley has the surgery, it would also be a 2-stage process with the grid mapping. I would like to use Katie's Health Journal to show my daughter how well she is doing now and hopefully ease some of her fears.
I hope you and your family continue to enjoy good health. I wanted you to know that Katie's story is still benefiting others.
***************************THAT'S WHY!
As long as this blog can be a blessing and an encouragement to folks like Dawn and her daughter Hayley, then I'll keep it up and running.
All because of God's Amazing Grace!!
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