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!
Saturday, October 3, 2009
Thursday, June 18, 2009
Recent Video EEG clear / Weaning off Medication
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!
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!
Thursday, May 7, 2009
Monday, November 24, 2008
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.
Thursday, November 20, 2008
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.
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.
Tuesday, November 18, 2008
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!
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!
Monday, November 17, 2008
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!
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!
Saturday, July 5, 2008
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.
Friday, June 27, 2008
Home From VEEG
All three of us were awake by around 7:30 this morning. I stayed up most of the night, with a few moments of drifting off here and there. I think I stole about an hour all together the whole night. The EEG technicians told us they should have the recordings analyzed by next Wednesday. That's when Katie's appointment with the doctor is.
Katie did very well considering all she went through with the prep and being confined to her hospital bed the whole time. Of course it took a while to wash out all the sticky stuff from the electrical leads. We're tired. During the testing Katie attempted to play on the laptop, but it kept on interfering with the EEG. I think for the most part she was quite board the whole time.
Katie did very well considering all she went through with the prep and being confined to her hospital bed the whole time. Of course it took a while to wash out all the sticky stuff from the electrical leads. We're tired. During the testing Katie attempted to play on the laptop, but it kept on interfering with the EEG. I think for the most part she was quite board the whole time.
2AM Update
Well it's about 2:15 a.m. and all is well. I've been doing pretty good at keeping my eyes open. For a while now I've been working on the laptop. I think by now it's making me a little tired. I found a couple new Bible study sights though. I've bookmarked them for future reference.
There have been a couple of nurses come in the room since about 12 midnight. The first one took vitals at around 12, then another one has come in a couple times to just check in. They are very nice to try to make the person awake as comfortable as possible. I don't know about you, but there is nothing comfortable about sleep deprivation. I'm doing ok though.
There have been a couple of nurses come in the room since about 12 midnight. The first one took vitals at around 12, then another one has come in a couple times to just check in. They are very nice to try to make the person awake as comfortable as possible. I don't know about you, but there is nothing comfortable about sleep deprivation. I'm doing ok though.
Subscribe to:
Posts (Atom)
