All Clear!

I've been so busy that I haven't taken the time to update the blog. Today we cancelled the appointment for the video EEG. The doctors told us that if Katie didn't have any symptoms over the weekend, that we should cancel. The weekend was clear of symptoms, so we cleared the appointment. Thanks again for all the prayers.

CT Scan Negative / Video EEG Questionable

Well, we are happy and confused all at the same time. The CT scan came back negative for any fluid build up - no pressure in the brain. That's really good news. Sandra talked with the neurologist's assistant today. She said that if Katie does not have any headaches, dizziness, or rapid eye movement between now and Monday, we are to call and cancel the video EEG. If she has not had any of these symptoms since last Sunday and Monday, it would be a long shot for her to have them during the 23 hour video EEG - and those symptoms are what they would look for.

If there are no symptoms, then we will decide how to pursue the eye problems if they reoccur. At that point we'll probably have her eyes checked.

So, for now we'll wait and see. I think the neurologist just wanted to make sure there were no problems related to the brain surgery first, to rule that out. I think that made us a little more nervous than maybe we should have been. However, as the neurologist said, its better to know for sure, than to be in doubt.

Thank you all for your prayers.

CT Scan and Possible Video EEG

Please see the previous post for details on events leading up to today.

Sandra called the neurologist today and left a message with his office about Katie. Within minutes, the head assistant to the doctor called Sandra back. Katie has a rush appointment tomorrow at Children's Hospital to have a CT scan. The immediate concern is that Katie may have a fluid build-up in her brain. This of course would not be good, to say the least. It is a possibility due to "foreign objects" being in her brain - post surgery.

After the CT scan, depending on what that shows, they want to schedule her for another 23 hour video EEG. This could very well take place this weekend. As I stated in the last post, the eye movement is an almost sure sign of seizure activity, but the possibility of fluid in the brain is scary and potentially very dangerous. We were told to keep a close watch on her tonight and that if there is any more eye movement like there was Sunday night, to take her to the hospital emergency immediately. Katie seems to not be aware of what her eyes are doing. All she knows is that her eyes have been bothering her. She says they have been doing "funny things" and feeling weird.

Please pray for Katie. When we tell her today about what she has to do, she is going to be very upset at first. Now that she's older and has experienced what she has in the past, she understands how it all works and knows it is very scary.

We'll update the journal as we get results and information. Thank you for praying!

Possible Concerns / Please Pray

Well it has been a while since I've posted anything on Katie's journal. For the most part she's been doing really well. The medication has seemed to be side-affect-free and Katie has been busy with school and church and just doing fine.

Well, last night while I was preaching, I looked over at Katie (she was sitting in the second row, off to my right) and she was rapidly moving her eyes left and right. I noticed her early on in the message and she was sitting there, paying attention, taking notes, etc. Then I noticed that she was just sitting still, making those rapid eye movements. At first it tickled me and I had to look away from her to keep myself from letting out a little burst of amusement. Then about 30 seconds later, I looked at her again and she was still doing it. I immediately felt a sense of panic come over me and without hesitation, I looked at her and said, "Are you okay?" I repeated myself because at first she didn't respond. She nodded her head, indicating that she was okay. I went on preaching.

I have since found out that while she was visiting with her grandma last Friday, she had done the same thing. Today, Katie experienced severe dizziness and headache at school. She came home from school and did her homework, but she was very run down. Tonight Sandra told me that Katie told her that in recent days she had caught herself doing it on more than one occasion.

Needless to say, Sandra and I are now concerned that something abnormal is going on. These are all signs of seizure activity. Sandra plans on calling and consulting with the neurologist tomorrow.

So, at first we thought it was just a little thing, but now we're wondering. Please keep Katie in your prayers. We will make updates as we find out some answers.

Thanks!

Doctor's Report / Another Year of Meds

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.

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.

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.

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.

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.

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".

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!

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.

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.

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?

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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.

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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!!

Song - Peace When I Leave It In Your Hands

PEACE (WHEN I LEAVE IT IN YOUR HANDS)
Verse 1
Time and time again I brought my burdens
I prayed and prayed that I could lay them down
But walked away still bearing on my shoulders
A heaviness and heartache You never meant for me to carry 'round
Chorus
But there's peace when I leave it in Your hands
Sweet peace when I leave it in Your hands
Just leave it there and never pick it up again
There's peace when I leave it in Your hands
Verse 2
I wouldn't say I've gained a lot of wisdom
Oh, but I have learned this much along the way
Lord, that You are always there to bear my burdens
At first I might not feel it but if I learn to trust You, come what may, I'll find...
Chorus
Bridge
When I'm tempted to doubt and question You
Lord, just keep reminding me
Chorus
Tag
Just leave it there and never pick it up again
There's peace when I leave it in Your hands

Song - What God Whispers in the Night

What God Whispers in the Night
CHORUS
I am waiting for His whisper in the nightI'm depending on His word to give me lightI'm expecting a victory in this fightI am listening for what God whispers in the night
REPEAT CHORUS
VS 1
In the midst of tribulation, seems the darkness has no endWhen my light of faith is fragile like a candle in the windAll alone 'tho I'm surrounded by my friends and family dearIt's Your strong voice that comforts meYour voice that says "I'm near"..
CHORUS
VS 2
In your word I've found my hoperest from my afflictionevidence of faithfulness, abiding love and graceIt is in this lonely midnight that I've found my greatest treasurethe assurance that You hear me and that you see me in this place...
REPEAT CHORUS
Roger Bennett

Song - Stay Close To Me

STAY CLOSE TO ME
Verse 1
Lord, I knew a time like this would surely come my way
When in disbelief, I'd watch my whole life change
I thought I'd have the words to tell You how I feel
But the only thing my heart is telling me to say is
Chorus
Lord stay close to me, as I journey through the darkness of this great unknown
Lord, stay close to me, though I've place my faith in You, I feel so all alone
My heart trembles like a child as I walk each scary mile
And the only prayer my lips can find to speak is Lord, stay close to me
Verse 2
I guess that I could ask You for some miracle
To even take away this trial that I face
But Lord, I know that You alone know what I need
So would You hold me tight as I journey through this place
Chorus
Bridge
Oh Lord, when I'm so scared, please be there, Lord
So I can rest in the promise, the promise that You care
Lord I know that I can make it through if all I have is You
Chorus

One Year Ago Today

It's hard to believe that it was one year ago today that Sandra and I received a phone call from the school telling us that Katie had had a seizure and that an ambulance was taking her to the hospital. Of course all the previous posts on this blog cover most of the ups and downs of that journey.

The Lord has been so gracious, and now all that happened is a distant memory. Not so distant, however, that we would easily forget all He has done for Katie. In fact a reality check came to us when we recently found out about the son of Michael's Jr. High baseball coach. His son, who is in the 4th grade, has what, at this point, could be a tumor in the same approximate area where Katie's tumor was. He will be going through all the same testing that Katie did, and is scheduled to have surgery in February. Please keep Justin and his parents in your prayers.

As for Katie, she is doing very well. The worst thing she has to deal with is her hair. People would never know the work that has to go into getting her hair ready to go out in public. It will probably be quite some time before she will be able to wear it as she puts it, "normal." Still, a small price to pay to be tumor-free!!