Katie's Health Journal

Another Great Year in Softball

2011-07-02T22:49:00.000-04:00

Regional Champs for the second year in a row!!!

Remembering God's Grace

2010-06-17T10:47:00.010-04:00

After all the enthusiasm surrounding Katie's great experience in her softball season, I decided to read through this entire blog... every post, every comment, every picture. Wow! I had no idea I would respond the way I did.

With every post and it's corresponding comments, all the emotions flooded back into my soul. It was amazing how I remembered so many details. Flashbacks of conversations with doctors, with family, with Sandra and Michael, and especially with Katie. It all came back, all but the pain. Sure the memories caused me to think of that little girl going through all that suffering. But when I got to the end, even the recent posts of a game, softball, the purpose of this journey was evident. To most it's not such a big deal. But to this father who watched his little girl receive the unexplainable grace and blessing from our gracious Heavenly Father, it causes much joy unspeakable, and full of glory... HIS GLORY!!!!!! You see, it's not the fact that my daughter is the greatest softball picture in the universe... OK, maybe a little. JK :-) Really, it's the fact that my God is so Big, so Strong and so Mighty, and there's NOTHING my God cannot do!!!!!!!

WE ARE SO BLESSED!

Thanks for letting me share this very personal moment.

By His Grace and for His Glory!

Bob

Three Years Post-Surgery

2010-06-16T09:26:00.005-04:00

Well, it has been three years (plus) since Katie's surgery and the Lord is blessing her in so many ways.

To see what's happening lately, go to Bob & Sandra's Place.

Katie pitching on girls' varsity softball team:

Katie pitching

District Championship

Regional Championship

Pictures from Regional Championship

Katie's Doing Great

2010-01-30T22:17:00.001-05:00

Just a quick post - All things are going well with Katie. She's growing up so fast. 8th grade, and taller than her mom. She likes the being taller thing!
I'm so thankful for God's amazing grace, and I'll never take for granted what He has done.

Last Dose of Medication

2009-10-03T22:57:00.007-04:00

Well, It has been a little over 2 years and 8 months since Katie's journey with seizures and a brain tumor began. Tonight she took her last dose of anti-seizure medication. It has been an amazing journey of ups and downs. Though the down times were scary as we met them, the up times have outnumbered the down times by far. We praise the Lord for His blessings and we are confident that He will continue to pour them upon Katie.
I would like to thank everyone for the prayers and comments on this blog through this whole time. I have been copying the blog on my computer and will print it up and put it in a notebook. The book will have all of the entries, including the many comments that friends and family made. This book will be a reminder to our family, especially to Katie, of how the Lord led in every moment of her journey. I may update it occasionally with info on Katie.

By God's Grace and for His Glory!

Recent Video EEG clear / Weaning off Medication

2009-06-18T14:19:00.006-04:00

Well, we heard the news we've been waiting for... Katie's video EEG came back 100% clear! We will now begin to wean her off her medication. This will take about 4 months to complete. During this time of transition, we have to take extra precautions while her body (specifically, her brain) gradually gets used to being medication free. It will be possible for seizures to be triggered as a result of any trauma or extreme tension. She will need to be monitored more closely during times when she is more susceptible to injury (i.e. - bath tub, pool, riding her bike, etc.). The doctor stressed the importance of not allowing sleep deprivation. These types of precautions are important for us to take seriously, yet it is also important not to over concern Katie in such a way as to influence her to hesitate in living a normal life.

A concern we are dealing with now is Katie's post surgery memory. When the doctor asked Katie if she remembered anything about the surgery, Katie began to break down emotionally. The doctor's assistant said she would mention this to the psychiatrist that tested Katie pre-operative. This is a matter that I have studied and am prepared to deal with from a Biblical perspective. This is an amazingly difficult matter for a young person to handle. However, we are confident that just as God's grace was sufficient during the time of the operation itself, His grace is more than sufficient to deal with the emotional effects of the trauma. Please pray for her and her parents as we help her with this need.

Our key verse that we will hold to is Philippians 4:13 "I can do all things through Christ which strengtheneth me."

By God's Grace & For His Glory!

Katie Playing Jr. High Softball

2009-05-07T22:43:00.002-04:00

All Clear!

2008-11-24T17:26:00.003-05:00

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

2008-11-20T12:57:00.004-05:00

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

2008-11-18T13:13:00.008-05:00

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

2008-11-17T23:32:00.006-05:00

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

2008-07-05T09:10:00.002-04:00

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

2008-06-27T20:02:00.005-04:00

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

2008-06-27T02:14:00.003-04:00

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

2008-06-26T20:56:00.003-04:00

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

2008-06-26T11:26:00.004-04:00

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

2008-05-16T11:06:00.003-04:00

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

2008-03-19T16:17:00.003-04:00

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

2008-03-13T11:59:00.005-04:00

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

2008-03-10T07:09:00.002-04:00

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?

2008-02-20T15:05:00.003-05:00

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?

***************************

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!!

Song - Peace When I Leave It In Your Hands

2008-02-03T10:44:00.000-05:00

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

2008-02-02T10:43:00.000-05:00

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

2008-02-01T10:41:00.000-05:00

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

2008-01-22T06:44:00.001-05:00

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!!

E.E.G. Today

2007-11-01T16:53:00.000-04:00

Katie had an E.E.G. done today as a standard check-up. Of course, I forgot to bring the camera again. I was hoping to get a good picture with the crazy hair-do with the wires going everywhere, but I lost the opportunity. Oh well, Katie wasn't disappointed!

While sitting in the room with Katie we saw a little boy, maybe around 7 or 8 years old, with his head all wrapped up and wires hooked up, heading up to get a video E.E.G. Immediately there were spontaneous flashbacks of our time with Katie doing that. That was when she had that really bad seizure that lasted for a long time. A chill went up my spine as I recalled those memories.

Praise the Lord for His grace and mercy! All that is behind us. We thank Him every day for what He did in Katie's life and we joyfully serve Him as we keep...

Goin' On With The Song!

Dr. Appointment Yesterday

2007-10-25T13:08:00.000-04:00

Yesterday (Wednesday) was Katie's 6 month appointment with her neurologist. After a thorough examination, and based on the MRI results, the doctor conveyed to us that he believes Katie is on course in her recovery. For now, she is to remain on the current medication. The next step is to set up an EEG as soon as possible. Then, another one in January of next year. Then, we will see the doctor again and discuss the procedure for weaning Katie off the medication. The goal is for Katie to be med free by March, 2008.

We're thankful for the Lord's continued work of grace in Katie's life and for the continued prayers of all our wonderful family and friends!

Katie's MRI / Prayer Request

2007-10-03T08:20:00.000-04:00

(Katie on her birthday this past Saturday)

This past Monday, Katie had her wires and bands removed from her braces so that she can have an MRI. The MRI is scheduled for this Saturday.

Prayer Request: Even though the tumor is gone and Katie has been on the anti-seizure meds, there are times when events trigger much fear in her. Nearly every time Katie would have a seizure in the past, it was preceded by vomiting. Recently we've been noticing that Katie has been sick the day after she ate ice-cream. We're guessing that she may be lactose (sp?) intolerant, but that's neither here nor there. However, Katie remembers that she would get sick like that just before a seizure. Lately, when she's been sick in that way, she has indicated to us that she is afraid that she is going to have a seizure. We're trying to reassure her that since the tumor is gone and with the meds, she doesn't need to be afraid. Please pray for her, that the Lord will give her peace regarding this.

Thank you all for your continued prayers.

Katie's 6 Month Checkup - Coming Soon

2007-08-31T07:09:00.000-04:00

Katie on her first day of 6th grade

There hasn't been much to update lately. Katie has been doing fine. The other night some of us from church got together and played a softball game. I have to admit, there were a few times I cringed when the ball went toward Katie, who, by the way, was playing in the short-stop position. But she barely flinched and made some great fielding plays.

Anyway, her six month checkup date is set for Wednesday, October 24th. To my understanding, they will try to schedule her MRI before that, so they can have the results for the checkup.

July 25th Update

2007-07-25T16:09:00.000-04:00

It's been quite some time since Katie's blog has been updated. It's hard to believe that it has been four months since Katie's surgery. In some ways it seems so far in the past and in other ways it seems like it all happened just last week.

Anyway, most of the news of what Katie has been doing over the last month or so has been on our family's blog (Bob & Sandra's Place). See Katie's week at Basketball Camp.

Katie has been doing great!! She has just recently completed taking one of the seizure medications and is now on just one kind.

Katie had a great time at our church's youth camp last week. This picture was taken during a volleyball game. Even amongst all the business of camp, she was good about remembering to take her meds. This week she is participating in the mornings at volleyball camp at the Flat Rock Rec. Center with some of her friends from church. We'll try to get some pictures on Friday.

No change as far as upcoming doctor visits. She will be going in September for another MRI and I'm sure we'll be seeing a doctor or two around that time as well.

We are so grateful for all the continued prayers and inquiries that we still get about Katie. She is very appreciative too. What a testimony she's going to be able to share with those who need the hope of a loving Savior.

The New Look

2007-06-07T08:06:00.000-04:00

Just looking at this picture brings tears to my eyes. No, I don't expect anyone to understand why; that's not important. To think about all that she went through and now to see her beautiful smile with that beautiful hair is truly a gift from our gracious Heavenly Father. HE IS SO GOOD!

Braces Back On

2007-05-25T07:23:00.001-04:00

This past Monday Katie had braces put back on. These braces are the non-metal kind; I'm not sure what they're made of. When it comes time for her to have more MRIs she will just have to have the wires and the metal rings on her back teeth taken out. These pictures were taken Thursday. Katie was dressed for field day at school.

Another Check Up - "Excellent Recovery"

2007-05-10T13:52:00.000-04:00

Katie had another doctor's check up yesterday; this time with the pediatric neurologist. After going through all the fun neurological testing of toe tickling, nose touching, finger pointing, etc. that we have become so familiar with, the doctor said, "We believe she's completely cured." Katie's eyes lit up when he said that.

We're now moving forward with some medication changes. Katie will gradually be weaned off of the seizure medication she is on now while simultaneously gradually switching over to another one. The doctor said that she will be on this medication for at least up to a year. The reason for the med change is due to severe side affects her current medication would produce being administered over a long period of time. He said any brain cells that were not removed in surgery could have been "trained" to seize. It is hard for them to know exactly since no one knows how long the tumor was there. So over this period of time of taking the seizure medication, those brain cells will be retrained not to seize. That is why it is important that she continues to take the medication in order to protect her from having any more seizures. We will schedule an appointment for sometime in early Fall for another check up and probably another MRI as well.

We are truly thankful to the Lord for the good outcome. We have been able to breathe a big sigh of relief and have already been pouring our full efforts back into the ministry. The folks at Flat Rock Missionary Baptist Church have been very supportive and helpful during the first part of this year as we have been going through this. They are truly a wonderful group of God-loving and caring people. Everyone who has reached out to us during this time has been such a wonderful blessing.

The Lord has touched my heart through this journey to better see the need for intercessory prayer. If any of you have prayer needs, please let us know. Our family will definitely spend time in prayer over those needs.

God Bless!

Bro. Bob Hugan

Pathology Report on the Tumor

2007-04-27T07:12:00.000-04:00

I failed to mention in the last post that we did receive the final pathology report on the tumor that was on Katie's brain. The final report concluded that the tumor was definitely benign. Dr. Sood said that the chance of a tumor returning is very, very small.

Katie's Checkup at the Doctor

2007-04-23T17:30:00.000-04:00

We took Katie to see Dr. Sood this afternoon. He checked her incision, and the area where the tumor was and said that everything looks great. He still wants her activity restricted for another month or so as far as school gym class and activities where any abrupt contact to her head could possibly occur. The skull is not completely healed yet.

Katie will need to be on seizure medication for at least a year, post-surgery; then be gradually taken off of it. She will have another MRI around 6 months, post-surgery.

On May 21st Katie is scheduled to have her braces put back on. Her new braces will be able to stay on when the time comes for her next MRI.

We're so thankful for how far the Lord has brought her up to this point. She truly has been blessed.

"Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us,
UNTO HIM BE GLORY...!"

A Post From Katie

2007-04-20T12:47:00.000-04:00

Hi everyone!

I want to thank everyone for praying for me. It seems like a long time ago that all that bad stuff started happening to me. My dad tells me things that I don't even remember. He said that's ok. God has blessed me so much. I know that He was watching over me while I was in the hospital and I know that because of Him I am doing good now. I am thankful that the tumor is gone and that my life is starting to get back to normal again.

My hair is growing back but not fast enough for me. I still wear the neat scarfs that my Grandma Miller made me. Thanks to everyone that sent me all the cards. I will keep them all. I can't even count how many there are. My mom still keeps a lot of them setting out. Thank you for the gifts too. My bed looks like I started a doggy collection. It is great! All the other gifts are wonderful too.

My dad told me every time I got something, who it was from. Some people I never even heard of before. There are a lot of nice people who know God and were very nice to me. Thank you so much!

I guess that's all. Thank you again!

Love,
Katie

Continued Progress / Check-up

2007-04-19T07:04:00.000-04:00

Katie has been doing well over the past couple of weeks. There has been no more swelling and the incision is healing. We have an appointment to see the surgeon next Monday for a checkup, as a follow-up visit. Depending on what the doctor says, we're hoping that Katie can be released from certain activity restrictions.

It's been amazing to watch her recovery and how the Lord has blessed her with as quick of a recovery as He has. It's such a good feeling to be able to talk with so many people who have been praying for her since January; to be able to share her story of this God-granted victory in her life.

Thank you all for your continued prayers!

First Day Back To School

2007-04-09T09:22:00.000-04:00

Today is Katie's first day back to school. We are so amazed at how well Katie has been doing over the last week. The swelling is gone and in her words, "the mushiness" is gone too. We are so thankful to the Lord for the healing He has brought to her.

Katie continues to receive cards and flowers and stuff from all over the country and even from other parts of the world. Some of the missionaries we know have sent her cards and gifts. That has really made an impression on her.

We are so blessed!

Progress Is Being Made

2007-04-03T09:02:00.000-04:00

Katie has been doing great. The swelling has gone down considerably. The soft spot comes and goes. It seems to be soft in the morning after laying down through the night. Then as the day progresses, the area becomes more firm. It must have something to do with the fluid around that area. We're keeping an eye on it and if it continues, we'll contact the doctors for information about it to see if we should be concerned.

Katie's Grandma Miller has made her some matching scarfs and culottes. Katie is definitely "goin' in style" with her new outfits. She bowled with her league team yesterday. She was pretty tired by the time the first game was over, but she plugged along to finish the second one.

Katie told me to tell everyone "hello" and that she is thankful for all who have been reading the blog and leaving comments.

Stitches Out / Limited Activity

2007-03-30T15:12:00.000-04:00

This afternoon we took Katie to get her stitches out. They came out fairly easily. There is some swelling around the area where the tumor was, but the doctor said it is not abnormal for that to occur. Sometimes the swelling gets worse, but they don't anticipate that to happen. We'll just need to keep an eye on it. Her activity level still needs to be limited until the swelling reduces.

Quick Trip To The Emergency - Nothing Serious

2007-03-29T08:55:00.000-04:00

Katie has been gradually progressing over the last couple of days. She was still experiencing some nausea on Tuesday. Tuesday night she slept through without having to get up. Wednesday was uneventful. She was a little weak, but she stayed awake all day.

About 5:00 a.m. this morning she woke up with a sharp pain in her left side. It was so bad that she couldn't stop crying. We waited about 15-20 minutes, after which, we decided to take her to emergency at South Shore Hospital. As Sandra was checking in at the registration desk, Katie vomited quite a bit. After we were placed in an examination room, the pain lessened. The doctors did a CT Scan and an X-ray. There were no abnormalities. They surmised that she may have had a kidney stone and that it may have passed. Based on the tests, they suggested that we purchase some medication to help her with her bowels, so we did that.

We arrived back home around 8:30 a.m. She is resting on the couch now.

WE ARE HOME!!!

2007-03-26T23:22:00.000-04:00

This picture was taken 60 seconds before we left what has been Katie's home away from home for one week, and one day. She had enough energy to hold that smile for about 6 seconds.

We drove out of the parking garage at 10:00 p.m. and arrived home around 10:30. As soon as we got in the door Katie got sick to her stomach. Thankfully the medicine had time to get into her system before that happened. We put her to bed and she was out in less than a minute.

People have asked if I will continue to update the blog. I'll keep updating on Katie's recovery for a while. They may end up only being daily, depending on how the days go.

Thanks to every who has been keeping up with Katie's condition and praying for our family. Words will never be able to express our gratitude for the love that we have and continue to receive from so many people. We are tired, but we are oh so blessed!

Keeping Occupied

2007-03-26T23:16:00.000-04:00

Here's Katie passing the time away as we waited and waited for news of whether or not we would be going home.

8:58 p.m. Update

2007-03-26T20:50:00.000-04:00

The doctor from neurology is here now, so we should be discharged momentarily.

7:20 p.m. Update

2007-03-26T19:22:00.000-04:00

Kristen, the charge nurse, just came in and told us that we should be discharged around 8:00 p.m. She said if nothing is done by then, we should check with the new charge nurse on duty to have her call and remind neurology again to discharge Katie.

Stay tuned!

Still Waiting

2007-03-26T18:54:00.000-04:00

I hope the previous post didn't gross any of you folks out. That wasn't my intent. Several people asked about them.

We are still waiting for Katie to be discharged. Paper work, paper work, paper work. Katie is taking advantage of the time to enjoy the comfort of sleeping in the fancy hospital bed, and we're all sitting here staring at her. As you probably guessed, we are bored! Hopefully we won't hear, "Well, we're sorry, you have to stay one more night." I think I hear my bed at home calling me.

The post later tonight will tell whether or not we've been discharged. We've seen other people discharged late, so here's hopin'.

Pre-Operation Pictures of Katie's Brain

2007-03-26T12:50:00.000-04:00

Here are the pictures of Katie's brain and the grid placement that I mentioned in a earlier post.

This picture is an actual camera shot of her brain, with the grids superimposed with identification. The circles represent the sensors on the grid that was placed on Katie's brain. The dark black circles and the white circles show the area where the tumor was. The tumor was located withing the perimeter of circles 4, 5, 13, and 12. This picture also identifies the different areas of her brain that help the doctors determine where the motor cortex, the sensory cortex and the language cortex were located in relation to the tumor.

This picture shows the tumor (golden yellow). The red line is the dividing line between the motor cortex (right) and the sensory cortex behind (left).

The dots in this picture are the sensors of the grid.

There is another picture that Dr. Asono has that is a post-op picture. Hopefully we will get a copy of that one too.

11:35 a.m. Update

2007-03-26T11:33:00.000-04:00

Going for a walk
The doctors have been in a few times and they say that Katie may be able to go home today. We won't know for sure until sometime this afternoon.

9:10 a.m. Update

2007-03-26T09:01:00.000-04:00

Katie had a good night's sleep, except for the nurse who kept on coming in throughout the night shining the light in her eyes. Usually the nurses stopped doing that during the night. Anyway, ever since she woke up this morning, she has been constantly nauseated and the area around the stitches is very painful now, especially when she coughs or sneezes. I told her to stop coughing and sneezing, but she didn't appreciate my dry humor. I don't have a comic's license, but hey, I'm trying!! :-)

Another Visitor

2007-03-25T22:39:00.000-04:00

10:20 p.m. Update

2007-03-25T21:55:00.000-04:00

I arrived back at the hospital around 9:30 p.m. Both Sandra and Katie were sleeping. It didn't take me long to wake Sandra up with the aroma of a couple pieces of pizza.

During the evening Katie was up and about. She rode around in a wheelchair for a little bit and she was awake longer than usual during the early evening hours. She ate a few bites of chicken for dinner and she seems to be having less pain. The doctors are encouraging us to get her up to walk tomorrow.

She had visit from another dog tonight. I haven't uploaded the picture yet, but I will as soon as I can.

4:50 p.m. Update

2007-03-25T16:39:00.000-04:00

I am now up here at the hospital. Katie had a few visitors from church this afternoon that cheered her up. She was able to get a shower today and they took off the head wrap for good. We were somewhat surprised by the size of the cut of the hair. The C cut is quite a bit bigger than what we had imagined it would be, but we'll learn to deal with it.

Katie just woke up and had a little victory in regards to the stomach pain she had been experiencing. Still needs some improvement, but it was a turn in the right direction.

I'll be leaving in a few minutes to go to church, so I want to spend some time talking with her before I leave. I'll post again sometime tonight when I come back up here after church.

Rough Morning

2007-03-25T09:39:00.000-04:00

I talked with Sandra this morning, a little bit ago, and she said that overnight it was uneventful, but this morning around 6:00 a.m. Katie began experiencing more nausea and severe abdominal pain; not just a stomach ache. The doctors are probably going to have to do something more intense to get her stomach working like it should again.

I'll update later this afternoon, as I can, between church services.

Sunday Morning Update

2007-03-25T08:06:00.000-04:00

Just a quick note; I haven't talked with Sandra yet this morning, but I did last night. She said that Katie was doing better. She wasn't experiencing the nausea as before and the pain was not so severe. Over a matter of a few hours the pain starts to come back and the nurses give some more pain medicine. The pain, however, doesn't seem to be so bad as before. We are thankful for that.

I came home last night to be with Michael. My parents, Ben and Jean Hugan, had been staying with Michael at our house since Monday. We are so thankful for all that they have done to make this time as normal as possible for him. We're also thankful to Linda Bowen, Lois' sister (Sandra's mom), for coming up to be a help to Lois. I could go on and on with the 'thank yous'. Anyway, I'll be going to church this morning; Matthew Rowland is preaching for me in both services today. He's the young man I've been training for the ministry. He preached Wednesday also. I'm very proud of him. The Lord is really using him at FRMBC.

I'll be going up to the hospital today and I will update the blog, Lord willing, this afternoon. Thanks again to everyone for the e-mails and comments on the blog. We love to hear from you all. We have read most of them to Katie already. I'll make sure she hears the most recent ones this afternoon.

Well, so much for this being a "quick note." :-)

God Bless you all on this wonderful Lord's Day!!
Bro. Hugan

2:30 p.m. More Pictures

2007-03-24T14:31:00.000-04:00

Katie with Charlie

1:50 p.m. Update

2007-03-24T13:32:00.000-04:00

A visit from Rocky

Katie had a pretty good morning. She has still had some nausea, but not constantly. She has been up out of bed and the nurse gave her a shower. Although it took a lot out of her and made her tired, it really refreshed her. Just a little while ago a visitor came by to see Katie. His name was Rocky. That really brightened her day. The Frosty made her happy too.

10:30 a.m. Update

2007-03-24T10:34:00.000-04:00

Overall last night went well. We all had a pretty good night's sleep, other than having to get up 4 or 5 times for a "thing". Around 4 a.m. Katie started to get nauseous and to experience pain again. Once she was given the medication, which took a while to get to the room, she was a little more relaxed. She tried to eat this morning, but she could only tolerate a coupe of bites. She watched a little TV this morning and is now sleeping. The nurse suggested that we could try to get her to walk across her room later today.

9:20 p.m. Update

2007-03-23T20:54:00.000-04:00

Sorry for not being at my "post" today. I was literally wiped out. I had to take advantage of a "crash" opportunity. I didn't sleep much, but knowing the tumor was out and we were heading down the back stretch of this journey, I just needed a little leave of absence. I hope you all understand. I know people have been asking people...

Katie was in ICU until 4:00 p.m. Shortly after she arrived in her new room, she was taken for the MRI. That took an hour, plus about an hour wait before hand. Once she came back up from the MRI, she started to get nauseous again. At that time we noticed that one of her hands was swelling up bad from an IV. They took out the IV and couldn't get a new one started again, due to her veins collapsing. They called an IV specialist and he was able to get a new one started. He happened to be the same guy who ran an IV during Katie's bad seizure last month. He was great. She continued to be nauseous, so they gave her medication for that.

We're praying that Katie will be able to get another good night's sleep tonight. We don't know what tomorrow holds; but we know who holds tomorrow!!!!!!

Sandra and I can't say it enough how we appreciate you all!

"Unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us." Praise His Holy Name!

9:45 a.m. Update

2007-03-23T09:36:00.000-04:00

Last night was, without a doubt, the best night for Katie and us. She slept most of the night. However, she did wake up a couple times with nausea. I think it was around 7:00 a.m. that she was awake and talking. The swelling is there, but as of yet, it's not as bad as before. It will get worse as the day goes on. She has had more nausea and headache this morning, so they have given her more pain medication.

Katie is scheduled for a MRI around 4:15 p.m. today. Hopefully she will be able to sleep through that. The doctors have said that she can go up to the 5th floor, where we were before, once a room becomes available.

Stay Tuned!

7:55 p.m. - Update

2007-03-22T19:33:00.000-04:00

It took a couple hours to bring Katie up to the ICU from recovery. We were able to see her in the hall before they took her to her ICU room. She looks a lot better without the 50 wires coming out of her head. Her head is still all bandaged up and she is laying flat on her back. She's conscious but very, very sleepy. That is actually a good thing for her and for us.

Bro. Cliff Christman and his wife, Tracy, drove up from Kentucky yesterday. They came to the hospital early this morning and spent the day with us and other family members. If anyone can get a smile out of Katie at this point, it is Bro. Christman; and she did smile when she saw him. Katie really likes Bro. Christman.

We anticipate that the swelling will happen like it did after the 1st operation, and that the 2nd and 3rd days will be pretty bad. However, it will only be temporary. She will be in ICU through tomorrow morning, then be transferred up to the 5th floor again. The estimated discharge from the hospital right now is Tuesday or Wednesday of next week.

We're praying that Katie will have a restful night.

Thanks again for all the prayers and comments. I have received e-mails from a lot of people. I have been reading them. Thank you all for understanding that I am not able to respond to each one. Know, however, that each one is received with much gratitude!

11:35 a.m. Update - Surgery Over

2007-03-22T11:25:00.000-04:00

Dr. Asono came and told us the surgery is over. Dr. Sood was still sewing up the incision as we were talking with Dr. Asono. The surgery went along as planned and they removed everything they needed to. Katie should have little if any side effects. She may have some difficulty in communication. If she does, it could last for a few weeks. She may not have much trouble at all. We just don't know yet. Dr. Asono went over with us their plan for Katie medication wise and what to expect over the next week. We'll be dealing with some of the same effects as we did with the first surgery, but there is some inward relief. There is the possibility that she could have a couple of really bad seizures due to the trauma of the surgery. Dr. Asono said if she did have them, they would be worse than anything we'd seen thus far. To reduce the chance of that happening, they will have her on strong doses of two different anti-seizure medications over the next three days. When I can, I'll upload computer images that show where the tumor was and how it related to the seizures. Hopefully we'll be seeing her by 1:30 p.m. or so.

We are praising the Lord here in the waiting room and thanking Him for his mighty love and grace.

Thank you all again for your prayers!

9:55 a.m. Update

2007-03-22T09:46:00.000-04:00

Last night was, overall, a more pleasant night. Katie still had a lot of difficulty with nausea and dizziness. At one point she was in a state of kind of talking out of her head. She said that she was seeing double. I noticed some abnormal spikes on the EEG, and this morning, Dr. Asono confirmed that there was some seizure activity at that point. It's not a real concern at this point.

They took her into surgery at around 8:30 a.m. We were told that the OR nurse would call and update us every couple of hours. The surgery may last somewhat longer due to the nature of it in comparison to when the grid being put in.

We are now praying for the surgeons during the operation. Thank you for praying along with us.

4:00 a.m. - Quick Note

2007-03-22T03:52:00.000-04:00

Just a quick note...

We just had to get up to help Katie do a routine "thing". I thought I would post a quick note to once again say THANK YOU for all the prayers. I probably won't post much early this morning since they will be getting Katie ready for the surgery.

We're pretty drained right now and emotions are running a little high, not bad just weary. We've been able to get a bit more sleep tonight; that has been helpful. My rheumatoid arthritis is flaring up bad tonight, so I prayed for more strength and took a Darvocet (?) "the big PINK pill." I'm sure I'll be posting later in the day during the surgery.

Thank you all for everything!

Bob

Some Escalation in Minor Complications

2007-03-21T21:03:00.000-04:00

9:25 p.m. - Not seizure related, as much as irritations; such as severe body itching, and numbness and tingling in the right fingers. Nausea is still a big issue. Sandra and I are really feeling physical fatigue. My medication for my arthritis is not keeping up with the needed relief. Please pray for us tonight (I feel silly asking that, knowing that you all are doing that) that God will give us the needed physical...

OK, it's been 45 minutes since I started typing this post. We've spent all our time with a nurse, trying to get Katie calmed down. She's been experiencing severe nausea, dizziness, and some double vision. The nurse thinks it's due to some of the meds she's been given. Either way, it's been rough. She's just now started to calm down after the nurse suggested laying her on her left side. The problem now is her ICP (having to do with the pressure on her brain) has been rising.

Gotta go.

6:50 p.m. Update - Not Much Change

2007-03-21T18:27:00.000-04:00

Not much new news. Katie has been able to sleep much of the afternoon. That is the best thing for her now. She still has had several bouts of nausea and dizziness, along with severe headaches.

Every one's prayers are such a GREAT comfort to us. This is very difficult from one minute to the next. The Lord's grace is really doing overtime.

Please pray for a little girl named Grace. She's only a few years old (?). I met her dad early this afternoon. She's being checked out for anemia and some other possible problems. I told him the Lord has allowed me through my trial to have quite a big network of prayer warriors. So I told him I would pass her name down the line. What an awesome opportunity the Lord gives us to be a blessing to others going through trials, as he blesses us through ours.

1:20 p.m. Update - Testing Results

2007-03-21T12:58:00.000-04:00

The Language Motor Mapping started at 10:00 a.m. and lasted the full two hours. The testing consisted of the doctor asking questions and Katie answering them. They were all relatively easy questions. While the questions were being asked, another doctor worked with the mapping wires connected to the grid on her brain and methodically stimulated specific areas of the brain. They stimulated arm and hand movement, mouth and tongue movement, shoulder and throat movement; not necessarily together as I have listed them.

Katie had a rough time throughout the whole time of testing. She continued to have severe nausea and a headache. She did well, but it was very overwhelming to her, as well as to Sandra and me. The doctors got all the data they needed and they are 80% sure she will eventually be seizure free after all is said and done. They have determined that none of her motor, sensory, or language areas should be effected.

It's been very rough, but the results of the tests are encouraging.

9:57a.m. Update - Rough Night Last Night

2007-03-21T09:41:00.000-04:00

Where to start... The late afternoon went fairly well yesterday. By early evening, Katie began complaining about head pain and being nauseated. There were some other complications that I won't go into but all in all, it was the roughest night we've ever had with her in the hospital. It was nothing extremely serious, but it was very stressful. Sandra and I both stayed in the room with her all night and we are exhausted. Both of Katie's eyes are now swollen completely shut. This is normal at this point in the process. It is very scary to her not being able to see. After the second surgery, the swelling isn't suppose to be such an issue. All the other testing for the day seems to be on schedule, as long as she can tolerate it.

4:00 p.m. Update

2007-03-20T15:24:00.000-04:00

We have been in a private room in 5 West-Neuro Surgery wing on the 5th floor since around 1:00 p.m. It took us a little work to get up here, seeing that this unit still had Katie scheduled to come up from the ICU on Wednesday. But, we finally made it up here.

They have already put her through quite a lot of testing today. I won't go into it all but most of it had to do with her hearing sounds and words. Tomorrow morning she is scheduled for some extensive language mapping. As long as Katie can tolerate it, it will last approximately 2 hours.

The head EEG technician, Dr. Asano just told us that Katie had 7 seizures, the last being around 2:30 a.m. this morning. Dr. Asano is in the room right now setting up for some language testing right now. This will help map out where the language cortex is located in relation to where the seizures have been occurring. There is a possibility that the language cortex could be in the area where the seizures are originating from. That would not be good because they have to remove any brain tissue that is causing the seizures.

10:30 a.m. Update

2007-03-20T10:10:00.000-04:00

Well, the night went along fairly uneventful for Katie. There was a period of time that the EEG monitor showed some spiking in the area around the tumor. This morning the Dr. said he would check the recording. There seemed to be an abnormal amount a nausea and a little vomiting early in the morning hours. She's still on medication for that. The swelling is beginning to progress somewhat. Usually the swelling gets worse on the 2nd and 3rd days. Her eyes are starting to show some signs of swelling around them, especially the left one and she is experiencing a lot of pain in her head. She is on a regular regiment of pain medication for that.

Due to a scheduling mix up, it looks like we may be staying in the ICU a little longer than originally planned. We were supposed to go up to a room this morning. It looks like it won't be until later this afternoon; possibly tonight.

We would like to thank all the folks who have been sending cards and stuffed animals and balloons, etc., as well as all the e-mails and comments on the blog. Knowing folks are praying for us, especially Katie, is of great comfort. We are also very thankful for the care that Katie is getting here at Children's Hospital in Detroit. We have been told that Dr. Sood, the chief Dr., is among the top pediatric neurosurgeons in the country. We're thankful to the Lord for that.

11:40 p.m. Update - Second Needed Seizure - AND LAST!!

2007-03-19T23:29:00.000-04:00

At 11:23 p.m. Katie had another seizure. This time it was a simple partial seizure. This is contrasted with the complex partial in that her ability to speak and respond to verbal stimuli remained during the entire 3 minute long seizure. There was no body jerking, eye twitching, or loss of consciousness. The head doctor (no pun intended; the chief doctor) was in the room at the time doing some language recognition tests, so he saw the whole thing. The monitor showed massive fluctuations of seizure activity in the same area of the tumor, only this time without all the side effects. After monitoring the seizure, he was confident that they will not need to map any more seizure activity. PRAISE THE LORD!!!!!!! He ordered her Keppra (seizure medication) to resume via I.V. This is such an answer to prayer. Only one bad seizure, then a bad one with no side effects - NO MORE!

Katie could still have a seizure because the medication takes time to build back up in her system. Still, no more seizure mapping. Tomorrow they will do more brain mapping. This is simply to monitor and map brain activity.

At this point, I think Sandra and I will be able to get some shut-eye so that we can be alert for tomorrow.

9:38 p.m. Update - Seizure #1 Passed

2007-03-19T21:29:00.000-04:00

At about 8:50 p.m. Katie had a complex partial seizure, with the hand jerking and eye fluttering; similar to the bad one she had back when they did the video EEG. Thankfully, knowing that this would likely occur, the doctors had the needed meds right in the room to administer to her within a couple of minutes of the start of the seizure. She was given oxygen due to her oxygen level dropping. The nurses stayed right in the room until it was over. After a couple of minutes, the seizure subsided. This is the first seizure of the three they want to map over the next couple of days. It wasn't as bad as the one last month, but to us, it was bad enough.

Sandra and I both plan to stay here in the ICU with Katie overnight.

5:20 p.m. Update

2007-03-19T17:15:00.000-04:00

Katie is sleeping now. She vomited a while ago; probably due to the anesthetic wearing off.

Please pray for Alissa (sp.?). I don't know anything other than she is in the ICU and is not doing well. I saw the family in the waiting room all upset and crying, so I asked if I could be of help. I think she's probably a teenager; I'm not sure though.

4:00 p.m. Update

2007-03-19T16:04:00.000-04:00

Katie has been in the ICU for a couple of hours now. Sandra and I have been in there. They've got her hooked up to a bunch of wires like they did for her previous video EEG. They have already started video monitoring her and looking for seizure activity. They want to see three seizures before they put her back on her meds. The concern is that the tumor is in close proximity to the motor function and the language function. The seizures are usually found in the brain tissue immediately surrounding the tumor.

We have been able to communicate with her. She has a couple of her stuffed dogs with her as well as a couple of big balloons that were given to her by ladies from Sandra's work. (Thanks for the lunch, ladies!!!)

Until next time

1:30 p.m. Update

2007-03-19T13:48:00.001-04:00

They just wheeled Katie up to the ICU floor. They let Sandra and I see her in the hallway for a few moments on the way to her room. She was pretty groggy, but she could hear and understand what we were saying to her. A nurse will come and get us when we can go in and see her. They're pretty strict with the limitation of visitors, and that's fine. She needs to get a lot of rest over the next 24 hours.

12:30 p.m. Update

2007-03-19T12:46:00.000-04:00

The grid is in place and they have covered the incision. Katie came through the procedure great. The doctor did say that there was some spiking in the mapping already. They have medication ready at bedside in case a bad seizure were to occur. We're waiting for someone to come and get us to move us up to the 4th floor to the ICU waiting room. Then we should be able to see Katie soon after that.

11:15 a.m. Update

2007-03-19T11:13:00.000-04:00

The doctor updated us a few minutes ago.
Katie has done great so far. The grid is in place. They made a C incision to open in order to place the mapping grid onto the brain. They will close it over and bandage her head completely to guard against infection. She should be in recovery by 12:00 noon and then to the ICU by 1:00 p.m. We should be able to see her after that.

So far so good!

Katie This Morning

2007-03-19T09:07:00.000-04:00

Stage ONE Has Begun

2007-03-19T08:56:00.000-04:00

Well, here we are, in the family waiting room. At the start of this post it's 8:57 a.m. They took Katie into the OR around 8:30 a.m. The doctors went over all the preliminary information with us and answered any questions we had. The surgery should take about 5 hours. We won't be able to see her until an hour to hour and a half after that. Katie was understandably nervous. She didn't say much, but I could see it in her eyes. After we prayed together and did all our hugs and kisses, they took her to the OR. Sandra was able to go with her to just be there for a few minutes. Sandra said they put a mask on her and within a minute Katie was out.

Now the waiting begins.

Packed And Ready To Go

2007-03-18T22:26:00.000-04:00

Well, this will be our last night at home for a week or so. Everybody at church has been such a blessing today. We've got our bags packed and ready to head to the hospital around 6:00 a.m. or so. As we were putting Katie to bed tonight the reality began to set in that tomorrow begins a rough journey for her. The fear of the "unknown" was evident in her tears. We talked and prayed with her as we assured her of the presence and power of the Lord in her life. And with a kiss good night, she was asleep within no time.

Thanks to everyone for the love and support as we have come up to this point. We know the prayers will keep going up, and we thank you all for that too. It's going to be a rough week physically, mentally, and emotionally, but I believe it will be an immense spiritual time for us as well. We know the Lord will be with us every step of this journey. Our daily prayer will be, "Lord, stay close to us!" And we know He will!

I've got the laptop packed with all the picture processing software loaded so that we can post some pictures during our stay.

Until then...

Another Change - For The Good

2007-03-15T11:50:00.000-04:00

ANOTHER NEW DATE
(Be sure to read the previous post)
Sandra called our coordinator at Children's Hospital regarding our concern that Katie would have an extra day between the two surgeries due to the 1st stage now being done on Monday. So the coordinator worked it out with all the doctors for the 2nd stage surgery to take place on Thursday, March 22nd. That's good news for us, especially Katie!

I feel dizzy and the roller coaster hasn't even left the platform yet! We know, however, that these changes are for a reason. We may not know it now, and maybe never will. We realize that the Lord is the REAL COORDINATOR here.

Like I said in an earlier post...

While we're waiting, God is working!

Sudden Change In Plans

2007-03-15T10:59:00.000-04:00

NEW SURGERY DATE: MONDAY, MARCH 19TH

We received a phone call from Children's Hospital this morning. The short version of the conversation is that Katie's 1st stage surgery has been rescheduled to Monday instead of Tuesday. One of the doctors is required to be in court on Tuesday. The other alternative was to postpone the surgery. We didn't want to do that.

This puts a crunch on some family and school plans we had. However, we're thankful that the surgery didn't have to be postponed. We've planned some good quality family time for the weekend, so we're praying nothing else changes.

We're trusting the Lord as we keep...
Goin' on with the Song!

Tired Without A Cause ??

2007-03-13T14:59:00.000-04:00

I never knew one could be so tired without doing anything. I suppose this is how such heavy burdens affect us.There have been a few tense moments dealing with the insurance and doctors' assistants, but for the most part it's just sitting; waiting. All the while Katie just plugs along like nothing is happening. I can tell as March 20th is getting closer I'm getting a little more tense. It's not affecting my behavior or attitude, just deep inside my soul. I know it's all in the Lord's hands and the doctors say it should all go well. Then I start to ponder the details of the surgery that I know about and it kind of knots my stomach. Not the unpleasantness of the surgery; I'm fine with that. But the thought of it being my daughter.

There's one thing I know - God's been good, God is good, and God will be good -
forever!

Psalm 18:2 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.

What more do we need?

One More Week

2007-03-13T07:13:00.000-04:00

Well, we're counting down the days... one week from today is "Stage 1."

Sandra is fighting off a bad cold that flared up yesterday. She had a pretty sore throat a couple of weeks ago. It has returned with a vengeance. She went to the drug store yesterday and is pumping down the meds to get better. She's going to try to get in to see her doctor today.

Katie cannot get sick! If Katie were to get sick, the surgery would probably have to be rescheduled. Remember the "bump in the road?" We need to have this surgery done in March. Please pray with us that Sandra feels better and that the rest of us, especially Katie, stay well so things can progress as planned.

We know that while we're waiting, God is working!

Playing Catch on a Warm Day

2007-03-10T15:30:00.000-05:00

Katie took advantage of the warm temps today and played catch with a friend. She was also taking advantage of the time she has to play before the surgeries. She will be in the hospital for about a week and a half total. Lord willing, not any longer.

Thank You Scott!

2007-03-10T01:11:00.000-05:00

Scott,

Thank you for talking with me and thank you for praying for me. I'm praying for Roger and Legacy Five.

Love,

Katie

Legacy Five Concert

2007-03-10T00:28:00.000-05:00

Thank you to my good friend, Bro. Ronnie Wolfe for editing the picture to make it clearer!

Last night we enjoyed a wonderful night of southern gospel singing by the Legacy Five Quartet. They were in rare form last night. They sang with their voices here in Michigan, but we knew their hearts were in Houston, Texas where Roger Bennett is in critical condition battling leukemia. And yet they had the graciousness to talk with me about what Katie is going through. Scott Fowler, co-owner and emcee of the group, was gracious to take time to talk with Katie personally. That really made an impression on her.

Thank you Legacy Five for making it a night of personal blessing for us!

There were a few people who had heard about Katie that talked with us who have gone through similar circumstances. That was a blessing too.

It's good to know that with earthly sorrow, we can have Heavenly Joy!

All because of God's amazing grace,
Bob

The Beginning Of Katie's Journey

2007-03-09T10:24:00.001-05:00

(a condensed version)

(See pictures below)

In January of 2007 Katie began to experience absence seizures that over a short period of time began to be more serious complex seizures.

It became known to us on January 22nd when Katie had to be rushed by ambulance to the hospital from school. After a couple of hours the doctors suspected that Katie had a vein abnormality on her brain. After a couple of weeks we found out through CT and MRI tests that Katie had a brain tumor. Surgery was scheduled to take place as soon as the doctors could do it.

The rest of this blog is a chronicle of the Victory that the Lord granted Katie over the brain tumor. It is our prayer that others can benefit from our experience and see how gracious and powerful our Heavenly Father is.

We are thankful for the thousands of people who followed our journey; who prayed and kept in loving touch with our family as we watched the Lord do a miracle in Katie's life. Most of all we are thankful to the Lord for His love and watchcare over our entire family as we traveled this journey.

These are pictures from when Katie was in the hospital during her video EEG in February.