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

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!

Phase One ...Complete

What a long day! Krissy was told to be at the hospital at noon, however she was not called back for surgery prep until 3:30 pm. Whew...talk about testing patience. She was a real trooper...and so was all our support team, as everyone waited to eat so we would not be eating in front of her (lol).
During the prep time, with all the questions 900 times and different faces of all the folks that would be a part of the operating room staff, Krissy told the doc that she wanted him to just shave all her hair off. Of course, for the MRI they had already done a real nice job of strategically placing bald spots all over her head! The doc was a little surprised, but Krissy insisted it was much easier to grow it all out even then to look like she had the mange.
Surgery began at 4:22 pm and the Doc called us in the waiting room around 6:30-6:45 pm. He told us she went through the surgery very well and he felt very good about where they placed the electrodes (as he put it, there was alot of sensitive activity in that area). Then our patience was really tested...as we did not get to see her in recovery until 8:45 pm.
She was very tired and they had just given her something for pain . . . but she looked great! Her first question was about the type of headdress they had put on her head. . . "the turban look" or not.
After we all had a few minutes to visit she was back to her nurturing self and insisted we all go to the hotel and get a good nights sleep. Because she was going to sleep! They were keeping her in ICU last night and we are now headed that way to see her.
Thank you all for your prayers and love! And thanks to Rob, Daniel and Pastor Sandy for the support for us Noa girls here at the hospital.
When you talk to Kristina. . . ask her about the two ladies we freaked out in the elevator yesterday morning...haha...always good to have a little comic relief now and then!

Finally, be strengthened by the Lord and His vast strength. Ephesians 6:10

Here We Go Again . . . Take Two!

Here we go again . . . . "take two" of an enormous adventure! It is Monday morning and we are sitting in the hotel . . . patiently waiting (not!) the time for us to arrive at the hospital for surgery. We have to be there for surgery prep at noon . . . and she will probably go into surgery by 2:00. So it will definitely be a long day. The hardest part is Krissy cannot have anything to eat or drink since last night at midnight.

Her spirits are high . . .and she is very optimistic about this surgery. She feels the timing is right and God has her prepared for this day! Your eyes saw me when I was formless; all my days were written in Your book and planned before a single one of them began. Psalm 139:16 After the many months of not knowing what was next with the research program . . .we are finally back on target. The surgery today will be to install the device for the Neuropace. Then we will go through the training on how to use the wand and laptop that information will be downloaded onto from the device in her head. Wow . . sounds too wild to be true! But, ultimate goal is to stop (or even reduce would be good) the number of seizures. And boy is she ready for that.

Her surgeon told us he would like to have us home in 4-5 days, by Christmas . . . .but the way we look at it . . . what a wonderful Christmas this will be to have the possibility of Krissy's seizures being controlled. We know God is in control and to Him we give the glory for all things!

We thank you for all your prayers and we ask that you will continue to pray for this journey we are on!

The Journey Continues

It has been almost four weeks since we left the hospital (and her hair is growing back) and Krissy had her first follow up visit today. She had a appointment this morning with the surgeon. He was very excited about seeing how she is healing and was almost "giddy" about some of the upcoming posibilities. The first thing he shared with us were some pictures...of the CT scan done with the grid in place and of her brain during the surgery. Yep, color pictures of her brain! He did ask to make sure we would not get sick when he showed us . . . however, he was thrilled to explain them to us! The pictures showed where the grids had been placed and he was able to show us exactly where the seizures were coming from. We were also able to see the scar tissue that has been the big issue. It showed up as a grey mass in the midst of so much red tissue. It was fascinating! (sorry the doc didn't let us have the pics to show)

The doctor shared that the UVA team will be having a video conference with the Neuropace team (in California) tonight to discuss Kristina. He felt very comfortable that she was a candidate for the neuropace and all the mapping and work that was done during her time in the hospital was now going to pay off. The team at UVA will be showing the neuropace team where they feel the device and electrodes will need to be placed to be most effective. On the picture of the brain he was able to show us exactly what the procedure will be. He told us there will be electrodes placed during another surgery and the device will replace a small square of her skull underneath the skin (kinda like a metal plate.) We should hear from one of Krissy's doctors tomorrow or Monday with a game plan.

We are feeling very good about this step and feel God is leading us in this direction. Kristina has not had a seizure since we left the hospital . . . however, the doctor told us this was a kind of "honeymoon" stage that sometimes happens after surgery. And wouldn't you know it . . . .she had two small glitches (a type of seizure where she just pauses for a few seconds) on our way home today!

Upon checking the mail today when we arrived home there was another appointment in Va on April 10 with the research team. So, I guess we are headed back pretty soon. I will keep you all posted as we receive news.

Once again, we thank you all for your prayers and concern during this journey in our lives!

There's No Place Like Home

It is Sunday morning and we are waking up in the Holiday Inn of Charlottesville, Va. Yeah!! We were "released" from the hospital yesterday afternoon. . . and yes we are both a little apprehensive. . .but we are out! The surgeon had suggested that we stay in Virginia last night just to make sure she has no complications over night. She did great! She is definitely not up to par yet . . .but hey . . she just had brain surgery (lol).

We are headed home later this morning. She is still on lots of meds and still a little shakey but we did do some walking around yesterday and ate dinner out. She was very excited!

We should be home later this evening and she has asked if I would let everyone know that she cannot wait to see everyone, but to give her a day or so before expecting her to be very social. Getting home and sleeping in our own beds is all we can think about right now! We will be at home for a few days before we jump back into the fast life of Spring Lake.

Krissy has completed one of the steps towards becoming seizure free. No, it didn't happen exactly like we had hoped, but we have lots of great doctors working on her case and we feel confident that God can use each of them in a mightly way. So, we will begin a new adventure the end of March . . . .working towards neuropace.

God is Still at Work

It has been a very interesting day with lots of events going on with Kristina. She started her day off very well and mid-afternoon she began to experience something new. While on the phone talking her vision became blurry and her right hand was numb. She was unable to continue talking and could not form her words. When she shut her eyes they began to flutter. This happened several times during the course of the afternoon and evening. She had one of the events while one of her doctors was standing in front of her bed. He felt this was a new type of seizure she was experiencing. With so much trauma to the brain he felt the brain has probably restructured how the seizures happen. We have had several doctors check up on her during the course of the day and they all agree that it is a seizure event. Now that she has learned to relax when it happens it goes by much quicker, however the first couple of times today she became very frantic and scared both of us. But all is good! We will adjust to this too.

The doctors did share with us today that Kristina is being discussed with several different boards (epilepsy board, neuropace board, surgery board) and they are all looking for the best solution for Krissy's case. That does give us comfort that they are working hard to find a way for Krissy to be seizure free.

There is still no doubt in my mind that God brought us here for this time and has a plan for Kristina. I know He is working through the doctors and nurses and is working in us.

I have had the chance to meet the family of my newest roommate. Our roomie is an 11 year old girl that is having seizure events (along with some other medical issues). She was born in China and was adopted by her mom here when she was 5 months old. Her mother is a single (never been married) licensed counselor that primarily works with children and their families. The mom was telling me today all the difficulties she had in finalizing the adoption and about her trip to China to receive her little girl. She told me she knew it was of God that this was the child He wanted for her because she had already selected a name and when she was receiving the baby a man told her the child's Chinese name. The name she selected meant "by the sea" and he told her the Chinese name meant "by the sea". She said this was no coincidence in her book . . .because there is normally no reason for them to have named the child in China . . so it was very unusual for that to happen.
This is their first visit to the hospital for her daughter and they are in the very beginning stages of her seizure and EEG irregularities. She told me she felt we were together so she could learn from us what to expect and how to deal with the issues they may face in the future. She listens to how Kristina and I deal with these new seizures and what the doctors talk to us about. Then she asks me questions. I have tried to be very encouraging to her, as I know the fear she must be feeling at this new stage in her daughters medical conditions. Yet, I tell her alot about how we have handled the years of seizures and how God has brought us through it.

I sit back tonight and think about all the people that God has placed in our path and all the things I have learned about life and love from each of them. We have made some very good friends; linked together not only by our siutations and time in the hospital; but by the love of Christ. I received a call from Rusty (his and Nancy's mom was the one with brain cancer) on the day of Krissy's surgery. He called to let me know he and his church were praying for Kristina and our family and would continue to keep her on their prayer list and check up on us until she was through with the entire ordeal to rid her of seizures. I had already seen Nancy the day before and she shared with me that her mother had died during the night. Her brother was already back in Florida and they would be having her funeral there. In the midst of all that was going on in their lives he still thought to call and check on her. Amazing how God uses us if we just allow Him to.

Once again, I thank all of you that have been praying for Krissy and all the encouraging words, and notes and cards. May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus, so that with one heart and mouth you may glorify the God and Father of our Lord Jesus Christ. Romans 15:5-6

Beginning of Recovery

Kristina has done very well today with the beginning of the recovery process. She was moved to her room at about 3:30 am this morning . . .after she had a CT scan at 2:30 am. The surgeon said the scan looked good and everything looks fine.

She has been suffering with headaches today and they are gradually trying to wean her off the IV pain relievers and having her take them by mouth. She is still on the steroid to keep the brain from swelling. She has been eating well today (with no vomitting . . yeah!) and she was able to take a walk down the hall and look out the windows today. She can actually even go to the bathroom alone without pulling a long cord behind her!

We are hoping to get to go home real soon! They want to make sure that there are no complications and she is feeling better before I take that long ride home with her. She has many, many staples in her head and it is very sore! She will experience some bruising along the left side of her face and eye as well. She cannot really smile today without alot of pulling and pain.

But...overall we are excited that she is doing as well as she is! We do not know the details as of yet about the neuropace . . . we need to get over this step first. "They that wait upon the Lord shall renew their strength . . " Isaiah 40:31

I am going to add some of the pictures of her from this morning. We talked about whether we wanted to put a picture of how her head looks on here, but she felt it might help everyone prepare for how different she looks. As hard as it is for me to look at the staples and cuts on her head . . . she is still very beautiful to me! I am very proud of her for her courage and strength!

2nd Surgery Day

It was a very long day as we waited in anticipation of the upcoming surgery. One of the eeg techs came in to remove all the wires and connections from Kristina. She felt like she was easily 50 pounds lighter once all the "stuff" was removed. Heather took a picture of Paul working on Krissy that she will later post for all to see. Originally it was planned for around noon (she was 3rd in line for the operating room). However, she was not called in until 3:30 pm and finally went into surgery around 5 pm. She was out and moved into ICU about 7:30 pm. The doctor told me the surgery went very well and he was able to get some more pictures of the grid and mapping for future use when it comes time for the neuropace. He feels the recovery will go well and quickly.

I was able to see her shortly after surgery and she was in alot of pain. She woke up alot quicker this time; before they had all the pain meds in place. She was also awake for the air tube to be removed from her throat . . .so she was not a happy camper. They will be keeping her in the ICU tonight because of how late she came out of surgery and will be moved back to her same room tomorrow. We are still uncertain about how long we will be here . . . depends on how quickly she starts feeling better. We are looking forward to getting home and being able to sleep for days! (lol)

We appreciate all the love and prayers for us! We have felt God's hand comforting throughout the day!

During our time of waiting for surgery, we were playing games with Jess, Rob and Heather (who came to be with me during the surgery). We also had the opportunity to meet our newest roommate, an 11 year old girl who is having some type of "event" that may be related to seizures that needs to be video monitored. I had a chance to chat with her mom and discover more about what is happening with her daughter and share Kristina's experiences with the doctors here at UVA. While the gang went out walking for awhile, I was able to share with this mom all the fears, uncertainties and positive experiences we have had since we began to come to UVA with the goal of finding a solution (or treatment) for Kristina's seizure disorder. I am once again amazed at how God put us in the right place at the right time to give us both the companionship with something in common.

Kristina has been a real "trooper" through all of this and I am very proud of how her faith has continued to make her strong! Even at those times when fear tries to overwhelm her...she relies on God for the strength and comfort only He can provide.
The Lord is my strength and my shield; my heart trusts in him, and i am helped. My heart leaps for joy and I will give thanks to Him in song. Psalm 28:7

Surgery Day

Today is the day for the surgery. They will be taking her in probably after noon and removing the electrodes. She is getting hungry already; when you get used to three meals a day, like clockwork, it makes it difficult. She is very ready to get these wires out of her head and get as back to normal as possible.

I am attaching some pictures we took yesterday after they re-wrapped her head. You can see the wires coming out of her head and I took a picture of the staples that are holding her head together. That is one of the nurses assistants, Crystal, and Krissy is talking on the phone with Cheryl. I will update you later today.

Just a note . . . the food nutritionist came by (of course with no food for Krissy) but wanted to wish Krissy well with surgery. She took her hand and said, "just remember, the Lord is my Shepherd, I shall not want."

God is Comfort

I know many of you have shared with us in the disappointment that this hospital visit and surgery has turned into. However, Kristina is doing very well with the news. Yes, she too is disappointed but feels that maybe Neuropace is what God wants for her, and she trusts Him to guide her through the next steps. Our new roommate's daughter asked Krissy today if she was scared when she went into surgery. She smiled and told the lady that she just went on without thinking about it a lot and that made it easier. Isn't that what God wants us to do? Who of you by worrying can add a single hour to his life? Matthew 6:27 Go with the flow...let God take charge. And she has done unbelievably well with that! We talked today about how God has been preparing us for awhile for this "adventure" and how he knew when we would be able to handle it. He knew that a few years ago we were not strong enough in our faith to have been through so much. So, I truly believe His timing is everything!
The morning started off pretty good....even Dr. Taft came in and told her how much he loved seeing her smile after such a scare yesterday. However, as the day went on it became another very rough day for her. She had another bout with the swelling and became very unresponsive to us. They increased her steroids and cut off food and fluids for a few hours in case the doctors needed to take her into emergency surgery. But, she pulled out again and began to feel better. As of now the surgery is still on for Wednesday morning. It has definitely made me realize that I want to be here as long as it takes for her to be in the clear before I bring her home. But boy do we want to go home.

On another note, we have a new roommate. She is an older lady that has had a shunt put into her brain. Her daughter is here staying with her in the room, as she is her primary care giver. The older woman asked who was over here talking and wanted to meet us. It turns out they are Christians and her grandaughter is a nurse at Cape Fear and lives in Stedman. We have already had a wonderful opportunity to tell them Kristina's story and talk about our faith. God is good . . . and He continues allowing us to meet brothers and sisters in Christ every day!

This passage was passed on to me from a dear friend; a great day to receive it.
2 Corinthians 1:3-5 (The Message)
All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort - we get a full measure of that, too.

God is Our Strength

May our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word. 2 Thessalonians 2:16-17

Each of you have been a great encouragement to us through your letters, calls, and most importantly prayer. Our Father in heaven has been our source of strength daily. I do not understand how people make it through the day and the difficult times (as the last two days have been) without Christ! It is unbearable to think of how many people go through the tough times without an understanding of the love, peace and strength that only God can provide.

Last night and this morning were probably the most difficult time Kristina has experience thus far. I noticed yesterday that she was just not herself, not responding to Jess and I as she would normally. She also complained a great deal more about her headache and nothing seemed to ease it. It was also very difficult to have to tell her about "Grandpa John" (as my girls so affectionately called John - who went on to be with the Lord last night). During the night she had three seizures and the headache continued to get worse. The surgeon came by this morning at the crack of dawn and upon hearing about her night and the headaches sent her to have a CT scan. They discovered that the side of the brain with the grid was swelling and pushing on the other side of the brain. They immediately put her back on steroids and were discussing emergency surgery to remove the grid if the swelling did not go down quickly. During this time, due to the severity of the headache, she began to throw up again. Once they got her medicated and the pain eased she felt better. Fortunately the steroid began working and she began to feel much better.

As of now, the doctors have decided not to go forward with the anticipated surgery to remove the scar tissue. They have discovered from all the tests, maps and gridding that the bad part is too close to the good part and would be too much of a risk for her. This has been terribly disappointing to us, however we know God sent us here and He is not done with her yet. The doctors want us to move on to looking at the second option which is the Neuropace (a type pacemaker for the brain). They feel the tests and the grid were not in vain, as all the information will be used for the placement of the neuropace electrodes. Unfortunately this procedure cannot be done at this time. Krissy will go back into surgery on Wednesday, Feb 28, to have the grid and wires removed. She will then be here an additional 7-10 days for recovery before we are able to return home. It will be a few months before we will return to have the neuropace installed; the brain needs to heal fully before the next step. As you can see it has been a difficult couple of days with alot of information and processing for us to do.

As we continue in our journey and face the disappointments that have come our way we still have hope. I was also reminded today that we do not have to always be so strong. God is our strenth. But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness" Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9

Day 13 and Counting!

I apologize for "slacking" off on keeping you posted...actually there has just not been a whole lot to tell in the last couple of days. We are on day 13 here at the hospital and when the doctor visited this morning he told us they really need to see more seizures. Go figure, 6 days without her seizure medicine and she has only had 3 seizures . . .total. . . and at home she has many in any given day. So, we are somewhat baffled as to what is keeping the seizures from happening. She has not felt real well today; severe headache, wanting to sleep more and looking a little pale. The nurse says all her vitals look good, so maybe it is just downright homesickness.

The doctor has shared with us that they are still concerned about doing the second surgery and removing a part of her brain. They need to see some of the other seizures to make sure that it is possible to take out the seizure area without damaging a good part of the brain. They do not want to leave her unable to use her arm or something of that nature. I am very thankful that the doctors are being so thorough, however it is disappointing to think that this may not go the way it was originally planned. One of the doctors did remind me that if this surgery is not possible that Neuropace is still going to be the other option. I have to keep reminding myself that God is in control and He does have a plan for Kristina and it will all be worked out in His time. The hardest part is knowing that Kristina may have to have a second surgery with no relief from the seizure disorder. We would not be able to have Neuropace implanted until a few months later. We are staying optimistic! Please continue to pray that the doctors will see what they need to see to make the wisest decision. You know I heard on a Christian movie last night that "if you want to make God laugh, tell Him your plans." I have thought about that alot today . . . cause things have not quite fallen into my nice little box of plans.

Last night I had the opportunity to sleep in a hotel bed while Jess stayed with her sister. I am very thankful for the chance to get a good night's sleep and be able to stretch out! It was very good for the three of us to be together for the weekend. We are so used to being a threesome!

We had some good friends visit us today, and that was a great joy! We had not seen them in a very long time and they actually now live two hours away from Charlottesville. We realize how hard it is for anyone to come up here due to the distance . . . so it was a great treat for us!

I was reading the book "Hugs of Comfort" today before I took it to our friends up on the eighth floor. There were many things in the book that stood out to me . . . .but today this touched my heart.
"God may be invisible, but He's in touch. You may not be able to see Him, but He is in control. And that includes what you've just lost. That includes what you've just gained. That includes all of life - past, present, future." ~ Charles R. Swindoll