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

There's No Place Like Home...again!

We woke up today in the hotel . . . wow . . .what an awesome nights sleep! No lights going on or off, no loud voices or alarms. Yep, we do not miss the hospital. They released us yesterday around 11 am and we opted to stay in the area just to make sure Krissy is doing ok before the long ride home. She slept very well and ate last night without getting sick. Unfortunately she is very, very swollen today. Her left eye is almost swollen shut and eating on the left side is almost impossible . . it pulls the staples to chew. She doesn't remember the swollen days from last time . . . but it truely is a repeat of February. She just doesn't want to scare anyone. She also didn't get to see herself bald last time because of all the wires and bandages. So, this is new for her (hey Jeff, you have more hair than Krissy right now . . .but she said hers will grow back out. .. lol). Boy will those hats she got last time come in handy!

We were able to use the wand and computer last night to download the information from the device to the laptop. That is actually kinda cool and Krissy says she can hear the static when it is downloading. We come back to Virginia on January 2nd for them to adjust all the technical stuff and for Krissy to get the staples out of her head. You know it is kinda scarey, her being a project, but at the same time exciting. We were reminded by many before we left the hospital about the amount of knowledge this device is going to be able to provide for the future. I just continue to pray that this is what Krissy needs to lead a normal life (hmm, the what again is normal, lol). Maybe I should just say a seizure free life.

I think one of the most difficult parts of the timing of this surgery for Krissy is missing some of the Christmas prep that is part of tradition for us. We always make my mom's famous ice box fruitcake . . . so guess what we will be doing tomorrow. And then the fudge and sugar cookies (like we need those). But part of the excitement is making them and giving them away. And I think this is important because of the wonderful memories that we have of the times we did this with my mom. Aren't traditions wonderful!

So, we are looking forward to a weekend of rest and enjoying Christmas! We have so many things to be thankful for and we are truly blessed! We are blessed with each other and so many friends and family!

We still have a long way to go with this adventure, but God is teaching me daily to take one step at a time. Enjoy life to the fullest and let Him handle the stress. Isn't our God awesome! He loves us so much that He wants us to have nothing to worry about. Just think how much He has to hold in His hands; because just my stress alone is enough for anybody. But He takes on all of our problems and issues....all our sins. And to think He came into the world as a tiny baby. How it must have hurt God so much to know His baby was going to one day have to die such a terrible death for me (and you). I know as a parent I cannot imagine giving up one of my girls for anyone . . . and yet God did for me . . . long before we were born. Christmas to me is such a time of reflection and a time of thankfulness! Please take the time to enjoy each other this Christmas season and remember Christ is the reason we celebrate!

Thank you all for your prayers and once again we ask that you continue to lift us up to the throne of God...as we do not know what the future holds.

One of my favorite Christmas shows is Charlie Brown (that I watch all year long) and I love to hear Linus explain the true meaning of Christmas.

"Today in the town of David a Savior has been born to you; he is Christ the Lord. this will be a sign to you; you will find a baby wrapped in cloths and lying in a manger." Luke 2:11-12

I had a dream last night about the children of the church singing a beautiful praise chorus . . . I woke up singing this song...

"I am madly in love with you, yes I'm madly in love with you. Let what we do in here fill the streets out there, let us dance for you, let us dance for you."

Krissy and I decided the most important thing we can do is continue to give God the glory for the good the bad and the ugly. . . and share what God is doing in our lives. . . and love Him madly and always continue to dance for God!

Whew...what are we doing here?

I realize I shared with you all last night that Krissy was looking good and all was well . . . and then the second day arrived. Don't get me wrong, she still "looks" great; no swelling, no black eyes, and great color in her skin...but she has not felt real great on the inside. I forget so quick the effects of anesthesiologist (or something like that - lol) . . . you know, the meds that put her to sleep. She has had a very long day, unable to keep anything in her stomach (meds, water, and definitely food). So, therefore, all meds for pain and nausea have to be through an IV or shot. So that also makes her very happy! And have you ever noticed that once the nurses give you medicine for the pain and tell you to try to sleep they wake you up every few minutes to see how the pain is and if you are able to sleep. (Things that make you go...hmmmm.) And that pain chart they teach you in the hospital . . . rate your pain from 1 to 10...10 being the greatest, and then when you actually have pain at the level 10 you get no more attention or pain medicine than when you have pain at the level 6. (Once again, things that make you go ...hmmmm.)

Ok, so I am done whining now . . . back to Krissy. Yes, her pain has been very severe tonight and it has been difficult for them to find the right combination of relief. So, the best medicine I know of to give her the relief she needs is PRAYER. We know that works!

Today was training day for the laptop, wand, and magnet to help record information. Only problem was Kristina was too sick to realize what was going on. So, Jess, Rob and I learned everything we need to know about the device and how to use all the "gadgets" . . . and of course Jess took notes for me! For the next 2 weeks to a month the device that has been implanted is going to be "learning" all it can about Krissy's brain and how it works (types of seizures, where they come from, etc). So, every time she has a seizure we are to run this magnet over the area of her head where the device is. This marks the seizure on the eeg that is continuously recording. Then we have a wand to use (the wand is called Jerry - because it looks like a mouse - and the device is Tom . . . you know the old cartoon of Tom and Jerry . . . mouse and cat. . . which by the way was Kristina's favorite cartoon as a kid) and we hold it to her head, where the device is to download into the laptop all info stored in the device. Then weekly we send all this info from the laptop to the Doc via the phone lines. So, now have I totally confused you! lol Anyway . . .that's what we have been doing today . . .and hopefully you get a feel of what is to come. And then Kristina asks me . . . "now what are we doing here??"

On a serious note . . . even though she feels rough today and is questioning why . . . .and I am totally in a whining mood . . . . we know God is still on His Throne and still in control! He never promised us a bed of roses! We know Kristina is in God's hands and He loves her, therefore, we have nothing to fear.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

note . . . to all of you that may be in the medical field . . . I in no way am trying to disrespect the work that is done by the many doctors and nurses that have cared so diligently for Kristina . . . we have the utmost respect for what they do . . . .and have many that are our favorites here!