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!!