Looking Good!

It is Thursday morning and Jess and I are sitting at the hospital with Krissy. She is still in a great deal of pain...but as the nurse keeps telling her, "hey, you just had brain surgery." And of course, Krissy tries so hard not to take the pain meds. The doctors will wait until around noon before they make the call as to whether or not she will be released today.

Surgery yesterday went well! They finally took her into the preparation area about 1:30 pm and rolled her out toward the operating room at 2:10 pm. We received a call that the actual surgery began at 3:00 and they were finished by 3:50 pm. Overall the procedure went well and now it is just getting through the recovery. She is definitely not liking the "turban" that is on her head right now! But Krissy always seems to bounce back pretty quick! She is such a trooper!

For those that do not know, the most recent medication change, along with the adjustments for the device, appear to be working! Kristina has not had a gran mal seizure for almost two full months! I don't think this has happened in many, many years! She is still having a few smaller seizures; however, they are much easier for her to deal with. We praise the Lord daily for His mighty hand and how He gives the doctors the knowledge to know what to do!

The surgeon just came by and shared that the surgery went well and they were able to repair one of the electrodes that was diagnosed as having some problems.

Kristina was very excited yesterday to see the response from so many friends and family that wore purple in recognition of epilepsy awareness and her surgery! She was overwhelmed with the show of support and love for her! Thank you from all the Noa's!

Cast your cares on the Lord and He will sustain you; He will never let the righteous fall. Psalm 55:22

A Long Overdue Update....Another Possible Adventure

It has been a very long time since I felt the urge to post about the journey Kristina has been living, however, upon Krissy's request I am updating the newest adventures in her journey to become seizure free. Seizures are still a very real part of our life but we are learning to let God handle the stress and just "go with the flow" of whatever comes our way. Krissy continues to bounce back from some very difficult times, although sometimes with bruises and aches to remind her of the challenges.

With the neuropace device in place, Krissy's seizures have been reduced by greater than 50% from before the beginning of the study. However, her neurologist doesn't want to believe this is as good as it gets for Krissy's future. Therefore, he has given Krissy some options to think about (I am sure he meant to "pray" about!).

The seizure count is down to an average of 15 per month (3 being gran mals), which after 35 to 40 a month, is a tremendous improvement. However, the doc feels the device is doing all it is going to do for Krissy and with several medication changes he is not confident about much more improvement. The first option is one newer medication that he prescribed this past visit as a last option for medication changes at this time.

The other option he has asked her to think (pray) about is the possibility of trying again to map out (grid) her brain and look further about the possibility of removing the seizure area (if you will remember from previous posts this was a process that involved very little room for error). He assured us the surgeon has been researching and feels it is a possibility; but would once again want to do the grid testing and monitoring the seizures before a final decision is made.

So, bottom line is this. If the new medicine does not reduce the number of seizures significantly the doctor wants Krissy to make a decision about future direction. She needs to decide if averaging 15 seizures a month is something she wants to live with for the rest of her life or does she want to opt for additional testing and surgery that could possibly eliminate or reduce the seizures further.

Our request from you, our family and friends, is that you will join us in praying about this difficult decision. Our most immediate prayer is that this new medication works to reduce the seizures. However, if it does not we want to be sensitive to God's plan for her life and make sure it is His will; whatever the decision.

We are currently waiting on a date (in the next 90 days) to have the battery changed and some adjustments on the electrodes (which involves opening the same incision area in surgery). It will be 3-4 days in the hospital in Virginia and is unavoidable as the battery life is running low. This has been done one time previously since the installation of the device.

God is doing a tremendous work in our lives and has allowed us so many adventures. We know God's hand is in the midst of all of our visits to Virginia as well. We ask that we would just be sensitive to what we are to do and make our decisions based on God's direction.

Once again I am reminded that God knows all things and knows the plans He has for each of us!

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Month 2 - Is it Working Yet??

It was 101 degrees in Virginia today . . . and the day seemed to drag on as we waited for one of the doctors to come in from the hospital. Once again Kristina's doctor seemed very excited over the progress...even though she has had some difficult gran mal seizures this month. We sometimes don't look at the big picture when we are living it day by day, but the doctors were excited over the decrease in number of seizures this month (16 documented versus 40 documented last month). They didn't seem as alarmed as I was about the severity of one of the gran mals. So, I guess when they put it like that is sounds much better. Of course, we had our hopes up that this was just going to be turned on and "no more seizures." I know, I know, patience is a virtue.
We had some kinda sad news today as we were leaving the doctor. The representative for the device that has been with us since surgery: training us and the docs on the use of the laptops and all the necessary equipment, is leaving the company. He is based out of Washington and travels all over the US to the see the patients in the study and is resigning due to family and personal reasons. He did share with us that he is very optimistic about the direction this is going with Kristina, however he did say we have a long way to go. There will be another representative from the device company; he has just been with us along the way. So, we will continue to plan our monthly adventures to Virginia and pray that things go well.
Keep Krissy in your prayers as we continue to go on day to day, month to month. And believe it or not, gas prices in Virginia are even higher than NC!! But, we know God is in control and will continue to provide all our needs.
To everything there is a season, a time for every purpose under heaven...
Ecclesiastes 3:1

It's Officially "On"

Today has been an exciting, anxious, nerve racking, busy, overwhelming day for Kristina and I. We are still here in Charlottesville, VA tonight . . . should have gone home . . .but the appointments today lasted until 6:45 pm. Whew . . . it started at 10:00 this morning, after a 3 hour neuropsychological test yesterday; today just was emotionally and physically exhausting! Krissy has been totally stressed all day and then right before we left the hospital today she had her eyes dilated! So now, stressed and can't see . . lol.

Krissy is officially at the end of the "blind research" portion of the neuropace process. Today the device was "turned on." Unfortunately the docs were unable to tell us whether the device has been on or off up to this point. That was a little disappointing, but all is good. Before we saw her neurologist this morning, Krissy had to take a very long mood survey (just like the one she had to complete at the beginning of the study). We laughed about the fact that even if she was in a good mood when we came in . . . completing the survey definitely changed that. :) The doctors once again seemed overly excited today.... almost giddy. We realize this is a huge deal in the research realm of things, we just have a much harder time being as excited as they are. Krissy was actually anticipating what it would feel like when the device was turned on today (assuming it hasn't been on up to this point). Was she going to feel a shock, or smoke come out of her ears...you know those kind of things . . . lol. It is a little scarey for us though . . .I guess the unknown. And then we have had to discuss the possibility that this is not going to be the solution to the seizure disorder. That is a big issue to swallow. Even one of the doctors reminded us that with four electrodes in place, but only being able to have two activated at a time, leaves alot of room for adjustments and the right combination. He mentioned that it was like everyone with the device has it's own set of fingerprints that have to be worked out.

After we left the neurologist we had to go over to the main hospital for her eye appointment. Krissy has been experiencing some blurry vision that the neurologist wants to make sure has nothing to do with her vision. Well, many hours and tons of tests later, her eye sight is good and is not the reason for the occasional blurriness. The head honcho doctor was very interesting! He spoke very fast and used a little recording device that he kept talking into as he asked questions of Kristina and I. Man did that stress her out! He didn't allow much time for you to think about the answers to the questions . . . he just pushed on. Is suppose to be the best when it comes to the eyes and the effects on the brain . . . and all that neurological stuff.

So, today as we were waiting in the doctor's office I realized how many times we have sat there looking out the same window. Amazing how time almost seems unreal as I realized how many seasons we have watched pass by throughout this process. We have seen the snow, the color changing on the mountains, the new life of the blossoms on the trees and now we are beginning once again to see all the flowers in full bloom. We realized today that we have made in excess of 25 trips to Charlottesville over the course of two years. Wow! But I trust in you, O LORD; I say, "You are my God." My times are in your hands;... Psalm 31:14-15

Kristina continues to be a real tough cookie! Once again we left the hospital knowing that whatever is in God's plan for her life, we will continue to enjoy each day as it comes and make the most of the life we have today!

Rejoice in the Lord always, I will say it again; Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philipians 4:4-7

Going on Two Years....whew!

Once again...it has taken a long time for me to update the blog. I guess it was that feeling of "no news to share"...yet I forget that I do not talk to everyone often enough to keep you updated. Therefore, I apologize.

We were in Virginia today. One of many trips in the last two years. Yep, we realized today that we started our trips to Virginia in the spring of 2006. Wow...doesn't seem that long ago. But today was the last visit as part of the "blind" portion of the research project with the implant. Next visit (May 6) they will be turning on the device...(and now I find out we may not know whether it has been on or off for this blind period). I realized today that knowing the device will be turned on is frightening for Kristina. I guess it is the realization that if the device has been off for this time period that would explain the continual seizures...but once we know it is on ...what if the seizures continue. What then?? Boy, so many possibilities.

This time of not knowing and just continuing to go along with whatever we are told to do has been a test of patience and faith. We found ourselves the first few weeks trying to figure it out..."hmm, a good couple of days, maybe the device is on." And then Krissy would have a huge seizure and blow our theory. It didn't take long before we decided we just weren't suppose to figure it all out . . . .we had to just go along "blindly" and wait and see. (I guess that's why they call this period of time the "blind" test . . . lol) So, we adopted a new theory . . . just live each day God has given us to the fullest. We are not to worry about tomorrow and do not know what tomorrow will bring. Amazing the lessons you can learn through the challenges and trials in life. Jesus tells us in Matthew 6:34 (the Message) "Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." Amazing instruction, yet it continues to amaze me how we forget so fast! Kristina and I have decide we don't want to miss out on anything God has in store for us just because we are afraid of what might happen. Yes, Krissy continues to have seizures and sometimes they are not in the most convenient places . . . .like in the car, or during church, or while teaching a class of children. But, this is our life and I am very proud of Krissy for making the most of it and not letting it control her! She is definitely my hero! Don't get me wrong, she would love to be able to drive and work, and it can get very discouraging for her...but she does not spend alot of time having "pity parties" as would be expected. She is stronger spiritually and emotionally than you can ever imagine!

We were talking today about the freedom she has to serve God in such a unique way. We are currently preparing to raise the funds to go on a mission trip to Canada! She doesn't have to worry about asking for vacation time...she has the freedom to just go (with me). As difficult as it is for her at times to have to spend every minute of every day with me we do enjoy the opportunities God has given us to serve Him together.

We continue to covet your prayers as Krissy is dealing with headaches at times and the area of the implant has a knot (the doctor tells us is normal for this type of surgery). She is also having some problems with her vision, believed to just go along with getting older; however, she will be seeing an eye doctor at UVA that is aware of the implant. As I mentioned , her next doctor's appt is on May 5 -6 (neuropsychological testing on the 5th and her neurology appt and eye appt on the 6th). The trip to Virginia is long and tiring and expensive, so keep us in prayer as we travel.

God is good and continues to watch over us . . . and that's enough for us!

On or Off...

Krissy asked me if I had updated the blog lately . . . .and of course, I had not. She wanted me to update everyone on where we are at with the research. And Krissy has begun to have seizures again . . . I guess the after surgery "honeymoon" is over. Of course we have to remember to keep the magnet with us...oops! Every time she has a seizure we are suppose to run the magnet over her head so the device will mark the EEG.

Well, we are in Virginia tonight. I guess we will be coming here every other week for awhile. Tomorrow is the day that the official "research" begins...the doctor will either turn the device on or off and we will not know which. After four months of the "blind" research her device will be turned on.

In the last couple of days Kristina has had some problems with her vision being a little blurry. However, she is suppose to wear her reading glasses and doesn't...but it has been somewhat worse. She is going to talk to the doctor about it tomorrow and she is going to the eye doctor next week to have her eyes checked. I think she is just a little concerned since it has been different since the surgery. Please pray that this is just ordinary, getting older, eye issues as opposed to a side effect of the surgery.

Other than her eyes, Krissy has been doing really well since the surgery. We are still adjusting to the process we have to go through with downloading into the computer and remembering to transmit the information from the computer through the phone lines. But we will get better as time goes on.

We look at our time traveling to Virginia as an adventure these days. It gives us alot of time to talk about everything, and we sing to all our CD's. We took a different route today to keep the trip from becoming monotonous. And I didn't even get lost!

As always, we do covet your prayers! We feel truly blessed for having so many wonderful friends and family!

Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord. Psalm 27:14

Happy New Year!

Here we are in a brand new year with new challenges and adventures! Today was Kristina's first follow up visit since surgery. She has been doing extremely well since the surgery and has had only three small seizures since then (all three the day after surgery.) Yes, that has been a good thing for us, however it is not because of the device. The device is still in adjustment stage and is having to "learn" Kristina's brain waves. The surgeon believes it to be a "honeymoon" stage after the surgery; because of the trauma to the brain during surgery she unexplainably has no seizures. (Of course this also happened for few weeks after the first surgery.)

Today the doctor took the staples out of her head. She was glad to have that done! The doctor also adjusted the device and prepared it for the beginning of the research stage. On her next visit, January 15, the research begins. However we will not know whether or not her device is turned on for the first four months. It is amazing to realize how much this little device in her head is capable of doing! We just continue to pray that this device is the answer to making Kristina seizure free!

We will be taking many, many trips to Virginia this year as they continue to monitor her progress closely. We ask that you continue to remember us in prayer. We know that Kristina would not be doing as well as she is today had it not been for the fervent prayers of so many of God's people.
I will make every effort to keep the blog updated as we progress in this research adventure.

Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. Hebrews 11:1 NLT